Blind and Visually Impaired Community
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Our newborn has cloudy corneas, seems to have light perception but no visual acuity. Torn between risks/uncertainty of transplants against potential for sight, or just leaving her be. Would love to hear from anyone, we are desperate. (self.Blind)
submitted by theGIRTHQUAKE
She’s 12 weeks old and absolutely a beautiful and otherwise healthy little girl. Both corneas are milky/cloudy, but testing has shown her eyes are otherwise normally-formed. We’ve done genetic testing (to look for CHED, etc.) but results are still pending.
Our docs have set her up for partial corneal transplant at the end of July—and we are struggling with whether to proceed. At her age, the risks are enormous and complications as she grows are almost guaranteed. But, she could have something approaching normal sight, and perhaps a “normal” life experience, if her brain is able to reconverge developmentally by doing the surgery this early. There’s just not enough information out there on prognosis for this surgery for someone her age, we’re essentially just guessing.
Alternatively, we could leave her be. She may be legally/significantly blind, but she wouldn’t have had the trauma/recovery of a risky surgery that could possibly leave her with pain and complications her whole life. She’d grow up this way, and this would be her “normal” at least until she was old enough to recognize she was different from other kids. I don’t know what to expect then. I expect tons of blind folks lead perfectly fulfilling lives, but I have to admit we have zero experience with blind people outside of what you see in movies/TV.
She is amazingly loved and will have the best upbringing we can give her no matter what direction we go, but we have no idea what the right call is right now and what to expect. We are looking to hear from anyone at all—have you or your child had corneal transplants, particularly at a young age? Are you blind or legally blind from birth and can weigh in on your quality of life and what you’d have chosen, given the choice? Any other advice or experience is welcomed and incredibly appreciated. Thank you in advance!
Edit: I can’t thank you all enough for your responses. My wife and I are going to work through them this weekend and hopefully reach out to a few of you, but in all cases your compassion and advice is humbling. Thank you!!
Our docs have set her up for partial corneal transplant at the end of July—and we are struggling with whether to proceed. At her age, the risks are enormous and complications as she grows are almost guaranteed. But, she could have something approaching normal sight, and perhaps a “normal” life experience, if her brain is able to reconverge developmentally by doing the surgery this early. There’s just not enough information out there on prognosis for this surgery for someone her age, we’re essentially just guessing.
Alternatively, we could leave her be. She may be legally/significantly blind, but she wouldn’t have had the trauma/recovery of a risky surgery that could possibly leave her with pain and complications her whole life. She’d grow up this way, and this would be her “normal” at least until she was old enough to recognize she was different from other kids. I don’t know what to expect then. I expect tons of blind folks lead perfectly fulfilling lives, but I have to admit we have zero experience with blind people outside of what you see in movies/TV.
She is amazingly loved and will have the best upbringing we can give her no matter what direction we go, but we have no idea what the right call is right now and what to expect. We are looking to hear from anyone at all—have you or your child had corneal transplants, particularly at a young age? Are you blind or legally blind from birth and can weigh in on your quality of life and what you’d have chosen, given the choice? Any other advice or experience is welcomed and incredibly appreciated. Thank you in advance!
Edit: I can’t thank you all enough for your responses. My wife and I are going to work through them this weekend and hopefully reach out to a few of you, but in all cases your compassion and advice is humbling. Thank you!!
smkelly 31 points 1y ago
Hi. I am legally blind. I was born with congenital glaucoma and two bad corneas. I had cornea transplants performed in 1982 when I was an infant. This allowed for my brain to develop more normal abilities to process visual information.
I am only one person, but I would recommend doing it. I've had something like 19 cornea transplants over the 40 years of my life, and there was little to no complications.
Why so many, you ask? Well, cornea transplants are donor tissue. This can result in rejection like any other transplant. However, there are medicines to help with this. And actually, we now have artificial corneas. I currently have a prosthetic cornea in my left eye. Specifically, a Boston keratoprosthesis. This is an option if there are issues with rejection or whatnot down the road.
This is a game of balancing risk and the "known" versus the "unknown." In my life, my parents and I have chosen to bank more towards the unknown because of the potential benefit it could provide. And, in general, I think it has all been in my favor.
To close out, it is worth noting that cornea transplants are pretty common procedures. While I'm not sure how common it is in infants, I do know that it is still a pretty regular occurrence. We've come a *long* way since I was a baby. There are always risks that your doctors can talk you through, but the payoff can be significant.
I am only one person, but I would recommend doing it. I've had something like 19 cornea transplants over the 40 years of my life, and there was little to no complications.
Why so many, you ask? Well, cornea transplants are donor tissue. This can result in rejection like any other transplant. However, there are medicines to help with this. And actually, we now have artificial corneas. I currently have a prosthetic cornea in my left eye. Specifically, a Boston keratoprosthesis. This is an option if there are issues with rejection or whatnot down the road.
This is a game of balancing risk and the "known" versus the "unknown." In my life, my parents and I have chosen to bank more towards the unknown because of the potential benefit it could provide. And, in general, I think it has all been in my favor.
To close out, it is worth noting that cornea transplants are pretty common procedures. While I'm not sure how common it is in infants, I do know that it is still a pretty regular occurrence. We've come a *long* way since I was a baby. There are always risks that your doctors can talk you through, but the payoff can be significant.
theGIRTHQUAKE [OP] 1 points 1y ago
I really appreciate you sharing your experience, that gives me some hope--we were concerned with the potential for many follow-up surgeries, rejection, likelihood of developing cataracts or glaucoma requiring their own surgeries, etc.
Is it accurate to assume you were able to handle these procedures in stride growing up and that, while you may be legally blind still, the benefits to your vision overall outweighed the difficulties?
May I ask what type of corneal transplant(s) you received, and what sorts of complications arose from transplant surgeries (besides repeats due to rejection)?
What was your experience when a graft rejected?
Do you recall any difficulties adjusting/adapting to your changing sight, whether due to (eventual) improvements from a transplant or from failure of one?
I understand if this is too personal or too much; if you're so inclined, please feel free to PM me instead. Otherwise, thank you again!
Is it accurate to assume you were able to handle these procedures in stride growing up and that, while you may be legally blind still, the benefits to your vision overall outweighed the difficulties?
May I ask what type of corneal transplant(s) you received, and what sorts of complications arose from transplant surgeries (besides repeats due to rejection)?
What was your experience when a graft rejected?
Do you recall any difficulties adjusting/adapting to your changing sight, whether due to (eventual) improvements from a transplant or from failure of one?
I understand if this is too personal or too much; if you're so inclined, please feel free to PM me instead. Otherwise, thank you again!
smkelly 1 points 1y ago
> Is it accurate to assume you were able to handle these procedures in stride growing up and that, while you may be legally blind still, the benefits to your vision overall outweighed the difficulties?
Yes, I think so. It was sort of all I knew, so it was no problem for me. It was probably harder for my parents, but they wanted to do it for me.
> May I ask what type of corneal transplant(s) you received, and what sorts of complications arose from transplant surgeries (besides repeats due to rejection)?
I believe all of them were PKP (penetrating) keratoplasty) except for the last one. I got a keratoprosthesis in 2009 and it is still doing well. I've never really had any PKP complications.
I've always been a big nerd and I'd be back on the computer the day after a PKP. I don't know how normal that is. I also had minimal to no complications from anesthesia.
> What was your experience when a graft rejected?
Some pain and light sensitivity. And then we'd work with my doctor to do another PKP. Of note,
> Do you recall any difficulties adjusting/adapting to your changing sight, whether due to (eventual) improvements from a transplant or from failure of one?
More of my vision loss comes from my glaucoma causing optic nerve damage. So it is hard for me to gauge this in the context of just cornea transplants. You know how you take off a watch and you feel the phantom watch for a day or two and then you stop noticing it? Or how you put on a. watch and stop noticing you're waring it after a day or two? That is my experience with vision change. It just becomes what is normal. Though, I don't want to understate the adaptations I've had to find for things in my life.
I hope this helps a little. It is hard to convey all of this in a comment box on the Internet. This is a difficult decision to make, and I see you're getting useful feedback from others as well.
Yes, I think so. It was sort of all I knew, so it was no problem for me. It was probably harder for my parents, but they wanted to do it for me.
> May I ask what type of corneal transplant(s) you received, and what sorts of complications arose from transplant surgeries (besides repeats due to rejection)?
I believe all of them were PKP (penetrating) keratoplasty) except for the last one. I got a keratoprosthesis in 2009 and it is still doing well. I've never really had any PKP complications.
I've always been a big nerd and I'd be back on the computer the day after a PKP. I don't know how normal that is. I also had minimal to no complications from anesthesia.
> What was your experience when a graft rejected?
Some pain and light sensitivity. And then we'd work with my doctor to do another PKP. Of note,
> Do you recall any difficulties adjusting/adapting to your changing sight, whether due to (eventual) improvements from a transplant or from failure of one?
More of my vision loss comes from my glaucoma causing optic nerve damage. So it is hard for me to gauge this in the context of just cornea transplants. You know how you take off a watch and you feel the phantom watch for a day or two and then you stop noticing it? Or how you put on a. watch and stop noticing you're waring it after a day or two? That is my experience with vision change. It just becomes what is normal. Though, I don't want to understate the adaptations I've had to find for things in my life.
I hope this helps a little. It is hard to convey all of this in a comment box on the Internet. This is a difficult decision to make, and I see you're getting useful feedback from others as well.
OldManOnFire 15 points 1y ago
First, my condolences. You're in a very difficult place and no choice you can make comes with any guarantee. It's awful to have to decide which set of consequences your daughter will live with.
Second, I'm *not* going to advise you on what you should do in this situation. Because I have no idea. There are pros and cons to either decision and your daughter will go through a stage in her teenage years where she's convinced you made the wrong choice. Don't take it personally - it's just what teenagers do to feel powerful.
What I can tell you is this -
* The genetic database for blind people is small. There's a good chance her genetic test results will come back inconclusive. Answers about blindness are hard to find. Many of us don't know why we went blind, we just did, and our doctors are just as confused as we are
* Blind people in the movies aren't portrayed very well. It's one of our ongoing gripes here on r/Blind
* $1
* You're excellent parents. The love you have for your daughter shows in the way you write. But this is going to wreak havoc on your marriage. Please consider couple's counseling. You and your spouse will experience an extra level of demands and stress due to your daughter's condition and there will be days when you're just too tired to be strong anymore. Be prepared for hard times ahead. I know you think love will carry you through (and I hope it does), but some days will leave you emotionally exhausted. You've given everything to your daughter and have no energy left to give to each other. Be prepared in advance. Have a plan
* Everyone who ever hears about the options you face will have an opinion, and 99% of them will think you made the wrong choice for your daughter. Just remember you're studying everything you can to make the best, most informed choice you possibly can, and everybody else is just talking out their ass. You've learned more about her condition in the last week than most people will learn in a lifetime. Remember that if you ever start to second guess yourself or your spouse. You're the ones required to make this decision, not them; she's your daughter, not theirs; and you've done the homework, they haven't
Lastly, here's an online hug. My blindness is caused by a genetic mutation that's most likely dominant, so there's a good chance some of my kids and grandkids already carry the gene that will start killing off the cells in their retinas, so I'm both a blind man and a $1s.
I feel ya.
You're welcome to DM me or post any time on r/Blind. If there's anything we can do, please ask.
Second, I'm *not* going to advise you on what you should do in this situation. Because I have no idea. There are pros and cons to either decision and your daughter will go through a stage in her teenage years where she's convinced you made the wrong choice. Don't take it personally - it's just what teenagers do to feel powerful.
What I can tell you is this -
* The genetic database for blind people is small. There's a good chance her genetic test results will come back inconclusive. Answers about blindness are hard to find. Many of us don't know why we went blind, we just did, and our doctors are just as confused as we are
* Blind people in the movies aren't portrayed very well. It's one of our ongoing gripes here on r/Blind
* $1
* You're excellent parents. The love you have for your daughter shows in the way you write. But this is going to wreak havoc on your marriage. Please consider couple's counseling. You and your spouse will experience an extra level of demands and stress due to your daughter's condition and there will be days when you're just too tired to be strong anymore. Be prepared for hard times ahead. I know you think love will carry you through (and I hope it does), but some days will leave you emotionally exhausted. You've given everything to your daughter and have no energy left to give to each other. Be prepared in advance. Have a plan
* Everyone who ever hears about the options you face will have an opinion, and 99% of them will think you made the wrong choice for your daughter. Just remember you're studying everything you can to make the best, most informed choice you possibly can, and everybody else is just talking out their ass. You've learned more about her condition in the last week than most people will learn in a lifetime. Remember that if you ever start to second guess yourself or your spouse. You're the ones required to make this decision, not them; she's your daughter, not theirs; and you've done the homework, they haven't
Lastly, here's an online hug. My blindness is caused by a genetic mutation that's most likely dominant, so there's a good chance some of my kids and grandkids already carry the gene that will start killing off the cells in their retinas, so I'm both a blind man and a $1s.
I feel ya.
You're welcome to DM me or post any time on r/Blind. If there's anything we can do, please ask.
theGIRTHQUAKE [OP] 2 points 1y ago
Thank you so much for your thoughtful words, and for the references!
We are prepared for everyone, including our daughter, to second-guess the decisions we make here. We're both in our upper/mid-30's and have the fortune (or misfortune?) of having developed some thick skins in our time on earth. We have been dealing with a stretch of adversity together even before this but have managed to weather it and remain solid--but it is still great advice to stay ahead of it, especially because it will likely become worse before it gets better.
I sincerely appreciate the time you took to respond and your offer to DM--we may take you up on it.
We are prepared for everyone, including our daughter, to second-guess the decisions we make here. We're both in our upper/mid-30's and have the fortune (or misfortune?) of having developed some thick skins in our time on earth. We have been dealing with a stretch of adversity together even before this but have managed to weather it and remain solid--but it is still great advice to stay ahead of it, especially because it will likely become worse before it gets better.
I sincerely appreciate the time you took to respond and your offer to DM--we may take you up on it.
taversham 11 points 1y ago
I had cataract removal surgery as an infant, and my mum told me that when she was worrying about the risks she imagined me when I was older angrily saying "so I'm blind because you were *scared*??".
I'm glad she opted for the surgery.
Edit: to add a bit more detail, although obviously I had a different procedure so it's not entirely comparable, the surgery I had was very successful in my right eye and with glasses I had normal vision in that eye. In my left eye it went wrong and I was left with only light perception. I've had to see an ophthalmologist every 6 months my whole life, have had to have various follow up procedures over the years, and because of a separate condition I have recently lost a lot of the sight I had in my right eye. These are never an over-and-done thing, whichever way you decide.
I personally remember nothing of my surgery (whereas I have vivid memories of having surgery on my arm as a 5 year old), so I think having it done as young as possible reduces the risk of emotional trauma.
I'm glad she opted for the surgery.
Edit: to add a bit more detail, although obviously I had a different procedure so it's not entirely comparable, the surgery I had was very successful in my right eye and with glasses I had normal vision in that eye. In my left eye it went wrong and I was left with only light perception. I've had to see an ophthalmologist every 6 months my whole life, have had to have various follow up procedures over the years, and because of a separate condition I have recently lost a lot of the sight I had in my right eye. These are never an over-and-done thing, whichever way you decide.
I personally remember nothing of my surgery (whereas I have vivid memories of having surgery on my arm as a 5 year old), so I think having it done as young as possible reduces the risk of emotional trauma.
theGIRTHQUAKE [OP] 3 points 1y ago
This hit home. My wife and I are going back and forth regarding this decision and, on average at the time of this writing, I'm leaning towards doing it and she is leaning towards not doing it. It all comes down to the differences in risk tolerance in the same vacuum of information. One of the main drivers on my side is this fever dream in my head that our beautiful daughter is 15 and struggling with feeling normal or fitting in, and says to me "you mean you could have potentially given me sight and you didn't?"
And so it comes down to the decision in net quality of life delta: is the potential gain from (an unknown level of) "legal blindness" to "near-normal" sight greater than the loss from legal blindness to total blindness enough to justify the risk? Could I handle the same conversation in reverse--"you mean I'm totally blind now when at least before I had \*some\* vision, because you made a risky decision without enough information?"
But it sounds like you're saying it's not so black-and-white. There's a lot of possibilities between the first "failed" transplant and total blindness. Can I ask what your experience was like with one normal (corrected) eye and one that was perception-only? Do you suffer from headaches, amblyopia, or any other complications from the difference?
Oddly enough, totally independent of this, I'm legally blind in my right eye due to corneal scarring from an injury when I was 16. I struggle with daily headaches and occasional migraines, many I suspect are largely from visual strain. While I don't have amblyopia, when I drink, or get very fatigued, my brain begins to conserve its energy for my good eye and the strain just wipes me out. Wondering if you've had anything similar--because one of our considerations is pursuing a transplant in only one eye for her.
And so it comes down to the decision in net quality of life delta: is the potential gain from (an unknown level of) "legal blindness" to "near-normal" sight greater than the loss from legal blindness to total blindness enough to justify the risk? Could I handle the same conversation in reverse--"you mean I'm totally blind now when at least before I had \*some\* vision, because you made a risky decision without enough information?"
But it sounds like you're saying it's not so black-and-white. There's a lot of possibilities between the first "failed" transplant and total blindness. Can I ask what your experience was like with one normal (corrected) eye and one that was perception-only? Do you suffer from headaches, amblyopia, or any other complications from the difference?
Oddly enough, totally independent of this, I'm legally blind in my right eye due to corneal scarring from an injury when I was 16. I struggle with daily headaches and occasional migraines, many I suspect are largely from visual strain. While I don't have amblyopia, when I drink, or get very fatigued, my brain begins to conserve its energy for my good eye and the strain just wipes me out. Wondering if you've had anything similar--because one of our considerations is pursuing a transplant in only one eye for her.
taversham 1 points 1y ago
> Can I ask what your experience was like with one normal (corrected) eye and one that was perception-only? Do you suffer from headaches, amblyopia, or any other complications from the difference?
I've never suffered any pain because of the difference. In general I don't really notice my left eye at all, it's pretty much a vestigial organ for me - it doesn't bother me and I don't bother it. I assume that's because my surgery was when I was only a few months old, so my brain perceives that as the normal state of affairs. The only time it really does anything if there is a bright light that is blocked in my right eye's line of sight, in which case it appears to me as if the light is shining through the object that is in the way (e.g. a candle half hidden behind a menu in a restaurant will look like the menu is on fire). I don't get visual strain because my right eye is used to always doing all the work, and my left eye rarely puts in any effort. I do have strabismus (wonky eye) in my weaker eye, but it's not extreme. People rarely notice it although it is slightly more obvious in photos, even school bullies never commented on it. If it were more severe I would have the surgery to fix it, which seems to be a pretty simple day surgery.
Growing up the thing that bothered me most about only seeing in one eye was the lack of depth perception and how that meant I couldn't really play sports like tennis or hockey or cricket very well, and I couldn't watch 3D movies, and couldn't use binoculars. Though obviously I couldn't have done those things any better with vision in zero eyes rather than one. But as I've got older and 3D movies and sports day have become much smaller parts of my life, I rarely notice it day-to-day. Occasionally someone will throw me something and I misjudge the catch or other times someone will show me an optical illusion that doesn't work for me.
I've never suffered any pain because of the difference. In general I don't really notice my left eye at all, it's pretty much a vestigial organ for me - it doesn't bother me and I don't bother it. I assume that's because my surgery was when I was only a few months old, so my brain perceives that as the normal state of affairs. The only time it really does anything if there is a bright light that is blocked in my right eye's line of sight, in which case it appears to me as if the light is shining through the object that is in the way (e.g. a candle half hidden behind a menu in a restaurant will look like the menu is on fire). I don't get visual strain because my right eye is used to always doing all the work, and my left eye rarely puts in any effort. I do have strabismus (wonky eye) in my weaker eye, but it's not extreme. People rarely notice it although it is slightly more obvious in photos, even school bullies never commented on it. If it were more severe I would have the surgery to fix it, which seems to be a pretty simple day surgery.
Growing up the thing that bothered me most about only seeing in one eye was the lack of depth perception and how that meant I couldn't really play sports like tennis or hockey or cricket very well, and I couldn't watch 3D movies, and couldn't use binoculars. Though obviously I couldn't have done those things any better with vision in zero eyes rather than one. But as I've got older and 3D movies and sports day have become much smaller parts of my life, I rarely notice it day-to-day. Occasionally someone will throw me something and I misjudge the catch or other times someone will show me an optical illusion that doesn't work for me.
annolot 1 points 1y ago
How is your vision now? My daughter had congential catracts and had her lenses removed also. She is 1 and wears glasses now. Do you have any advice for me to help support her? Thank you for anything you can share.
taversham 1 points 1y ago
Sorry this comment is a bit of a jumble, I've just tried to think of things that might be useful for you to know.
My sight stayed pretty consistent throughout my childhood and early adulthood with decent vision in my right eye and almost none it my left, it actually slightly improved over the years until my early 20s. I've lost a lot of my sight since my mid 20s (I'm 31 now) but it is due to a separate health issue so that isn't relevant to your situation. My vision was good enough to legally drive and to read the little writing on shampoo bottles, even though it was only in one eye.
My own experience growing up was that adults around me focussed too much on wanting me to feel normal, telling me I could do everything that everyone else could do, that it was overwhelming when I couldn't do something because of my sight. For example, because my surgery was only successful on one eye I have never had any depth perception (although your daughter may well have fine depth perception) and therefore things like playing catch or tennis or whatever was a real struggle, and I was always told "you just need to stick with it" or "you're doing really well" when actually I would have preferred to have been told "yeah this is difficult for people who can't see very well, don't worry about it". It's okay to acknowledge limitations.
Relatedly, make sure you talk about what normal vision/eye experience is like - I always had very sharp pains in my eyes when I was out in the sun but I thought that everyone did, it's what I thought people were referring to with "don't look at the sun because it will hurt your eyes". I never really mentioned it until I was 12, because I didn't know I was different. At that point my optometrist was able to give me different lenses in my glasses to help with the problem. Light-sensitivity is very common in people who've had cataracts removed, so it's something to be aware of.
If you can consistently see the same medical staff then I think that can do a lot to make check-ups less scary. I know when I was younger I was fine when I had appointments with my regular optometrist and ophthalmologist, but would get frightened with ones I had never met before - even when the tests were all the same. In general though I didn't find eye appointments stressful or upsetting as a child because they were a regular feature of life for as long as I could remember.
Try to teach her to look after her own glasses from as early as possible - how to fold them, how to put them down safely, how to wipe them off, etc - and how to advocate for herself if someone tries to take them or do something stupid. It'll obviously depend a bit on how fast she develops, but by age 3ish ideally she would be largely self-sufficient with them. There were various times as a child where a (probably well-meaning) adult tried to say "I'll just take your glasses and put them over here" or similar and I had to snatch them back and say I needed them.
If you're going to a waterpark then get a goggles strap to keep the glasses on when she's on rides, but don't leave the strap on all the time because it'll dig into her face. A normal glasses strap is not sufficient.
Personally I tried contact lenses a few times when i was aged 14-16 because I was self-conscious about how I looked in glasses, but for the last 15 years I've stuck with just glasses - I prefer them, possibly because I've worn them since I was a baby so I'm used to them, I never felt comfortable with contacts in my eyes.
I don't know if this is relevant where you live, but often children's glasses are much cheaper than adults glasses. Find out what's the oldest age she can benefit from child prices or subsidies (e.g. in England glasses are free up until age 18) and make sure you get a new pair close to the deadline.
My sight stayed pretty consistent throughout my childhood and early adulthood with decent vision in my right eye and almost none it my left, it actually slightly improved over the years until my early 20s. I've lost a lot of my sight since my mid 20s (I'm 31 now) but it is due to a separate health issue so that isn't relevant to your situation. My vision was good enough to legally drive and to read the little writing on shampoo bottles, even though it was only in one eye.
My own experience growing up was that adults around me focussed too much on wanting me to feel normal, telling me I could do everything that everyone else could do, that it was overwhelming when I couldn't do something because of my sight. For example, because my surgery was only successful on one eye I have never had any depth perception (although your daughter may well have fine depth perception) and therefore things like playing catch or tennis or whatever was a real struggle, and I was always told "you just need to stick with it" or "you're doing really well" when actually I would have preferred to have been told "yeah this is difficult for people who can't see very well, don't worry about it". It's okay to acknowledge limitations.
Relatedly, make sure you talk about what normal vision/eye experience is like - I always had very sharp pains in my eyes when I was out in the sun but I thought that everyone did, it's what I thought people were referring to with "don't look at the sun because it will hurt your eyes". I never really mentioned it until I was 12, because I didn't know I was different. At that point my optometrist was able to give me different lenses in my glasses to help with the problem. Light-sensitivity is very common in people who've had cataracts removed, so it's something to be aware of.
If you can consistently see the same medical staff then I think that can do a lot to make check-ups less scary. I know when I was younger I was fine when I had appointments with my regular optometrist and ophthalmologist, but would get frightened with ones I had never met before - even when the tests were all the same. In general though I didn't find eye appointments stressful or upsetting as a child because they were a regular feature of life for as long as I could remember.
Try to teach her to look after her own glasses from as early as possible - how to fold them, how to put them down safely, how to wipe them off, etc - and how to advocate for herself if someone tries to take them or do something stupid. It'll obviously depend a bit on how fast she develops, but by age 3ish ideally she would be largely self-sufficient with them. There were various times as a child where a (probably well-meaning) adult tried to say "I'll just take your glasses and put them over here" or similar and I had to snatch them back and say I needed them.
If you're going to a waterpark then get a goggles strap to keep the glasses on when she's on rides, but don't leave the strap on all the time because it'll dig into her face. A normal glasses strap is not sufficient.
Personally I tried contact lenses a few times when i was aged 14-16 because I was self-conscious about how I looked in glasses, but for the last 15 years I've stuck with just glasses - I prefer them, possibly because I've worn them since I was a baby so I'm used to them, I never felt comfortable with contacts in my eyes.
I don't know if this is relevant where you live, but often children's glasses are much cheaper than adults glasses. Find out what's the oldest age she can benefit from child prices or subsidies (e.g. in England glasses are free up until age 18) and make sure you get a new pair close to the deadline.
meganbernadette 8 points 1y ago
What state are you in? We were in your exact shoes 4 years ago and opted to try the transplant on one eye and leave one alone. Feel free to PM me!
theGIRTHQUAKE [OP] 1 points 1y ago
Excellent, thank you, we will PM you soon!
TXblindman 8 points 1y ago
Also had several cornea transplants over my life, first one was it several weeks old.
theGIRTHQUAKE [OP] 1 points 1y ago
May I ask you some more detail regarding the type of transplants, and your experiences (whether as relayed to you or from direct memory)? Happy to do it over DM if you don't want to share publicly. In any case, thank you for your input!
TXblindman 1 points 1y ago
I have no problem answering what I can publicly, please ask away. I can only imagine the level of anxiety you’re feeling.
Mel_AndCholy 6 points 1y ago
My gf is legally blind.
For context this was 32 years ago and medicine has greatly improved.
She had cataracts removed at six months (no artificial lenses) which left scaring and her pupils unable to dilate. She is UV sensitive. The scar tissue caused pressure to build in her eyes, which was left unchecked. Although her eyes had the potential to see better than they do, her lack of glasses at a young age caused her brain to not learn how to see very well today (as explained by her glaucoma specialist). This likely would have been worse if she hadn't gotten the surgery sooner.
Couple that with unchecked pressure for many years in her early youth, she suffers vision loss. Basically she looks through a straw with one eye while her other is mostly blind.
She does artwork on the computer and codes, so she does really well. But, the bane of her existence is not being able to drive as most of the world is made for people who can.
I can tell you and your partner are good parents, who are considering all the possibilities and only want the best.
You can risk surgery complications or you can wait and risk her brain not learning how to see in her formative years if you wait too long.
I'd talk to multiple specialists if you are able to. Bring up your concerns with them. I'm no doctor, just sharing.
Another thing I'd like to add is, she has zero memory of the surgery. Her earliest painful memory regarding her vision is around eight or so regarding UV sensitivity.
I wish you the best of luck.
For context this was 32 years ago and medicine has greatly improved.
She had cataracts removed at six months (no artificial lenses) which left scaring and her pupils unable to dilate. She is UV sensitive. The scar tissue caused pressure to build in her eyes, which was left unchecked. Although her eyes had the potential to see better than they do, her lack of glasses at a young age caused her brain to not learn how to see very well today (as explained by her glaucoma specialist). This likely would have been worse if she hadn't gotten the surgery sooner.
Couple that with unchecked pressure for many years in her early youth, she suffers vision loss. Basically she looks through a straw with one eye while her other is mostly blind.
She does artwork on the computer and codes, so she does really well. But, the bane of her existence is not being able to drive as most of the world is made for people who can.
I can tell you and your partner are good parents, who are considering all the possibilities and only want the best.
You can risk surgery complications or you can wait and risk her brain not learning how to see in her formative years if you wait too long.
I'd talk to multiple specialists if you are able to. Bring up your concerns with them. I'm no doctor, just sharing.
Another thing I'd like to add is, she has zero memory of the surgery. Her earliest painful memory regarding her vision is around eight or so regarding UV sensitivity.
I wish you the best of luck.
theGIRTHQUAKE [OP] 2 points 1y ago
I really appreciate you sharing her story, this gives us more to keep in mind as she ages. I am very sorry to hear her experience and vision could have been better, but encouraged to hear she is still able to lead a fulfilling life with some adjustments. I hope you two are doing well--can I ask how you met? In transparency, the motives for that question are partially genuine curiosity but largely because I'd like to understand what sorts of social limitations, if any, she may need to deal with and what her experience living in a "fully-sighted" world may be from that regard.
If I may also ask, can you share anything additional regarding your experience as her SO, daily life or in general, and any challenges (or things that actually aren't challenges)? I understand if this is too personal, but please feel free to DM me if you're inclined to respond.
In any event, thank you!
If I may also ask, can you share anything additional regarding your experience as her SO, daily life or in general, and any challenges (or things that actually aren't challenges)? I understand if this is too personal, but please feel free to DM me if you're inclined to respond.
In any event, thank you!
Mel_AndCholy 1 points 1y ago
Np!
We met online through our artwork. We are also both disabled, though mine is physical.
Even though she gets around well and is able to work, the world is not set up to allow self employed individuals to succeed as this is the only form of employment she has been able to find due to her lack of driving. She still partially relies on disability.
In addition, it's not that she isn't willing and able to work, but most employers discriminate. If it's not lowkey because of her sight, it's because she doesn't have what's considered reliable transportation.
Still, we do okay together.
As an SO, I drive her everywhere. There are a lot of risks with her walking and taking public transit that I'd rather avoid.
She's been nearly hit multiple times (even with her cane) and have had multiple loose dogs just charge her. Still, the biggest lesson I've learned is to just let go to prevent myself from smothering her if she really wants to do things independently.
So, biggest challenges are driving. She use to live in a rural small town and grew up extremely isolated. It's been our experience that living within a city with better access to resources improves our mental health and wellbeing. We also raise animals and sometimes have to drive out of state for events. This is something she can't do on her own that I have the privilege to make possible for her.
Technology has got to be our biggest asset. One of the reasons she took up code is because even if she loses all her sight, she can use screen reader. Mac has been more accessible in her experience than windows.
Light house for the blind and disability resource centers have been very helpful through her life.
Her medications are very expensive. Without aid, we would never be able to afford them. Independence is hard as disability barely pays for basic needs. She's had issues finding places to rent because her income is so low (even for a room).
Finding doctors can be really hard, but this depends on your state. We use to live in a state that has government insurance that was divided up in a bunch of different private companies. One doctor's office would take the private company insurance, but not the government's version of that. Sometimes, that left us with one poorly rated specialist in the state. One time, that left us with no specialist within the state that took the insurance lol!
Now, we live somewhere that's so much better, but for a while we had to pay out of pocket for doctor visits.
Sometimes, she pays out of pocket for glasses or just doesn't get new ones because she has a very special lens that hardly anyone makes anymore. Your daughter won't have that problem because artificial lens are a thing now.
We've been together for ten years and are basically glued at the hip. What I can't do because my body fails me, she can do and vice versa. Keeping and making friends is hard. She use to code at cafes to be around people, but now we have the pandemic to worry about. Socialization can be a challenge.
I hope that helps.
Society is ever evolving and technology is making the world more accessible. Likely, by the time your daughter ventures out in the world a lot will change for the better.
We met online through our artwork. We are also both disabled, though mine is physical.
Even though she gets around well and is able to work, the world is not set up to allow self employed individuals to succeed as this is the only form of employment she has been able to find due to her lack of driving. She still partially relies on disability.
In addition, it's not that she isn't willing and able to work, but most employers discriminate. If it's not lowkey because of her sight, it's because she doesn't have what's considered reliable transportation.
Still, we do okay together.
As an SO, I drive her everywhere. There are a lot of risks with her walking and taking public transit that I'd rather avoid.
She's been nearly hit multiple times (even with her cane) and have had multiple loose dogs just charge her. Still, the biggest lesson I've learned is to just let go to prevent myself from smothering her if she really wants to do things independently.
So, biggest challenges are driving. She use to live in a rural small town and grew up extremely isolated. It's been our experience that living within a city with better access to resources improves our mental health and wellbeing. We also raise animals and sometimes have to drive out of state for events. This is something she can't do on her own that I have the privilege to make possible for her.
Technology has got to be our biggest asset. One of the reasons she took up code is because even if she loses all her sight, she can use screen reader. Mac has been more accessible in her experience than windows.
Light house for the blind and disability resource centers have been very helpful through her life.
Her medications are very expensive. Without aid, we would never be able to afford them. Independence is hard as disability barely pays for basic needs. She's had issues finding places to rent because her income is so low (even for a room).
Finding doctors can be really hard, but this depends on your state. We use to live in a state that has government insurance that was divided up in a bunch of different private companies. One doctor's office would take the private company insurance, but not the government's version of that. Sometimes, that left us with one poorly rated specialist in the state. One time, that left us with no specialist within the state that took the insurance lol!
Now, we live somewhere that's so much better, but for a while we had to pay out of pocket for doctor visits.
Sometimes, she pays out of pocket for glasses or just doesn't get new ones because she has a very special lens that hardly anyone makes anymore. Your daughter won't have that problem because artificial lens are a thing now.
We've been together for ten years and are basically glued at the hip. What I can't do because my body fails me, she can do and vice versa. Keeping and making friends is hard. She use to code at cafes to be around people, but now we have the pandemic to worry about. Socialization can be a challenge.
I hope that helps.
Society is ever evolving and technology is making the world more accessible. Likely, by the time your daughter ventures out in the world a lot will change for the better.
retrolental_morose 4 points 1y ago
I'm a bit late on this, but another of those blind from birth more than happy to talk with you. I have a fully-sighted daughter (not her fault, we love her anyway), but it's raised a few interesting challenges over the years.
I also teach blind or Vi teens, many of whom have had very mixed results with corneal transplants - for some,it's regained them independence and almost felt like "a stay of execution". For others, it's caused horrific eye pain and failed to live up to the promise of improving things in any way at all.
I will just add that I was perfectly happy in my blindness, in fact there was a time when I was happy to potentially donate working parts of one of my eyes to a young lady in need. if I could have sight now, I think i'd go for it, but only if it meant I could carry on. One of the most recent corneal transplant people I know has been in constant pain for 6 months, really struggling to get through their finals at university and such, but the timing was such that if they didn't go for the transplant now the opportunity would have been lost. I'm pretty sure they've done worse at university as a result, the pain and the regular hospital follow-ups taking them away from their friends and studies both. Hopefully it won't impact a future career too badly, but certainly they are no better off visually.
Equally, as I said, I know people who are very happy to have more vision than they would have had without a transplant. A little vision can go a long, long way. I can't even identify geography when out with my child, and that stings sometimes.
It's a huge decision, and you're really on a knife edge. If you have more questions do come back.
I don't think there's a right answer here. Whatever you do or don't do, there'll almost certainly be a time in your daughter's life when she will resent you for it, because everyone takes the time to mull over the road not taken. We've not hit the "why are you both blind" stage in my own daughter's life yet, but it is inevitable. it sounds as though you're both incredible parents, though, and the fact that you recognise that there is a choice - that people without eyesight can live fulfilling, happy, productive lives, says much about the sort of people you are. So thank you for that recognition. It means a lot. Please keep us posted and come back here to talk over things. :)
I also teach blind or Vi teens, many of whom have had very mixed results with corneal transplants - for some,it's regained them independence and almost felt like "a stay of execution". For others, it's caused horrific eye pain and failed to live up to the promise of improving things in any way at all.
I will just add that I was perfectly happy in my blindness, in fact there was a time when I was happy to potentially donate working parts of one of my eyes to a young lady in need. if I could have sight now, I think i'd go for it, but only if it meant I could carry on. One of the most recent corneal transplant people I know has been in constant pain for 6 months, really struggling to get through their finals at university and such, but the timing was such that if they didn't go for the transplant now the opportunity would have been lost. I'm pretty sure they've done worse at university as a result, the pain and the regular hospital follow-ups taking them away from their friends and studies both. Hopefully it won't impact a future career too badly, but certainly they are no better off visually.
Equally, as I said, I know people who are very happy to have more vision than they would have had without a transplant. A little vision can go a long, long way. I can't even identify geography when out with my child, and that stings sometimes.
It's a huge decision, and you're really on a knife edge. If you have more questions do come back.
I don't think there's a right answer here. Whatever you do or don't do, there'll almost certainly be a time in your daughter's life when she will resent you for it, because everyone takes the time to mull over the road not taken. We've not hit the "why are you both blind" stage in my own daughter's life yet, but it is inevitable. it sounds as though you're both incredible parents, though, and the fact that you recognise that there is a choice - that people without eyesight can live fulfilling, happy, productive lives, says much about the sort of people you are. So thank you for that recognition. It means a lot. Please keep us posted and come back here to talk over things. :)
theGIRTHQUAKE [OP] 1 points 1y ago
I can't thank you enough for this response, and my wife and I would really love to DM/speak with you sometime. We really don't know what life for blind folks looks like, and how to ensure she has the best opportunities to be happy and fulfilled and how to deal with the tough questions and self-doubt that may (or may not!) arise as she matures and recognizes the differences in her life experience from those around her.
I also struggle selfishly that I may not be able to share a stunning mountain sunset with her, or beautiful paint job on a classic car, or the differences in architecture from papa's home country of the USA from mama's home country, the Netherlands, when we travel. How can she see the smile in my eyes when I'm giving her a playful hard time, or the unadulterated love in her mother's when she's playing?
Your situation is unique (to me), and I'm sure you have a lot of great perspective to offer! Were your parents sighted, and what did you \*actually\* struggle with growing up? We may reach out soon or sometime down the road, if that's OK.
One of my wife's biggest fears is as you've described--our daughter ending up with chronic pain and complication, with and even without benefit to her sight. Do you know of any common thread in those that experienced this? Type of surgery, age, experience of the surgeon, compounding health or lifestyle factors? I understand you probably don't have that info, but worth the ask.
In any event, thank you so much for your time and thoughts. Wish you and yours the best.
I also struggle selfishly that I may not be able to share a stunning mountain sunset with her, or beautiful paint job on a classic car, or the differences in architecture from papa's home country of the USA from mama's home country, the Netherlands, when we travel. How can she see the smile in my eyes when I'm giving her a playful hard time, or the unadulterated love in her mother's when she's playing?
Your situation is unique (to me), and I'm sure you have a lot of great perspective to offer! Were your parents sighted, and what did you \*actually\* struggle with growing up? We may reach out soon or sometime down the road, if that's OK.
One of my wife's biggest fears is as you've described--our daughter ending up with chronic pain and complication, with and even without benefit to her sight. Do you know of any common thread in those that experienced this? Type of surgery, age, experience of the surgeon, compounding health or lifestyle factors? I understand you probably don't have that info, but worth the ask.
In any event, thank you so much for your time and thoughts. Wish you and yours the best.
Rw0004 4 points 1y ago
My little one lost his sight at 3 years old due to an uncommon reaction to chemotherapy. He regularly gets frustrated that he ‘can’t do what his friends do’ because he is blind. If there was a shot at surgery he would take it. He is 9 now so 6 years later it is still something that he wants fixed. My advice would be that providing it is not life threatening and it won’t make anything else significantly worse, give it some serious consideration. I don’t think I could handle the guilt over all of these years if I’d had the chance to fix it. This sounds very doom and gloom and I’ve no doubt my little one will make peace with it at some point but I’d do anything to give him what he wants. Good luck and enjoy her
theGIRTHQUAKE [OP] 1 points 1y ago
I am very sorry to hear about your little man--I wish him the best in adapting and eventually feeling happy and fulfilled. I'm sure he'll get there with your support.
Your experience speaks to my leanings on the issue, how can I tell her down the road that she might have had more normal vision but I didn't try? I know, logically, that we have perfectly valid reasons to be reticent, but that's a tough pill to swallow myself--can't imagine the resentment I'd feel as a child fully realizing how I'm different from my friends because my parents "didn't act."
Your experience speaks to my leanings on the issue, how can I tell her down the road that she might have had more normal vision but I didn't try? I know, logically, that we have perfectly valid reasons to be reticent, but that's a tough pill to swallow myself--can't imagine the resentment I'd feel as a child fully realizing how I'm different from my friends because my parents "didn't act."
JackEsq 4 points 1y ago
Parent of a blind child here, diagnosed at 6 months old. We had no option for surgery, but I’m happy to give a perspective on what life is like now that she is 7 years old.
niamhweking 2 points 1y ago
Same here if it helps. DD is 10yo. No option either for surgery.
There is a lovely short story called "welcome to Holland" a friend always recommends to New diagnosis parents
There is a lovely short story called "welcome to Holland" a friend always recommends to New diagnosis parents
theGIRTHQUAKE [OP] 1 points 1y ago
Thank you very much--we may reach out to you. Funnily enough, my wife is actually Dutch, so sold on your recommendation!
theGIRTHQUAKE [OP] 1 points 1y ago
Thank you so much for this offer. My wife and I may DM you, soon or down the road, if you are amenable.
Do you have a happy little girl?
Do you have a happy little girl?
JackEsq 1 points 1y ago
Of course she’s happy. She just does a few things differently than her friends and peers.
AtriceMC 4 points 1y ago
My parents skipped the shots that would give me a chance at better sight. I resent that. Do some research. Weigh the pros and cons.
Lyssa221201 2 points 1y ago
I'm very late to this, but I can offer my experiences if you'd like.
I was born with a visual impairment that can't be fixed with surgery. I have some usable vision, but not enough to do things like drive or play most sports not specifically designed or adapted for blind/visually impaired individuals. I... honestly don't know if I would take the chance at surgery if it were offered to me. There are days when I would in a heartbeat because I hate not being able to get myself from one place to another without having to ask for rides. I also worry a lot about not getting a job in my chosen field, because I was dumb enough (no regrets though. I'm happy in my stupidity) to want to get into the animal care field. There are other days, however, when I worry that if a surgery existed, going for that option would lead to my remaining vision being lost or other consequences.
There are a lot of challenges that I (and many others) have had to face to carve out places in a world that isn't always accommodating to people with disabilities. It can 100% be done, but I won't lie and say it will always be easy for you or your daughter. I can tell that you both are going to be amazing parents for her. No matter what route you end up going with, don't limit her. Raising her will be different. My family did their best to let me figure out how I needed to do things and let me do almost anything sighted peers did. They didn't put limits on what I could and couldn't do as a partially blind child, and that really helped me deal with a lot of the beliefs that many able bodied people hold about what I should be able to do.
I'm sorry if this was too long and rambly. It's hard to get all of my thoughts out in a coherent manner sometimes. If you have any questions or just want to reach out, please don't hesitate. I don't have experience with your situation, but I'd be more than happy to provide any info or assistance that I can! Best of luck with whatever you choose.
I was born with a visual impairment that can't be fixed with surgery. I have some usable vision, but not enough to do things like drive or play most sports not specifically designed or adapted for blind/visually impaired individuals. I... honestly don't know if I would take the chance at surgery if it were offered to me. There are days when I would in a heartbeat because I hate not being able to get myself from one place to another without having to ask for rides. I also worry a lot about not getting a job in my chosen field, because I was dumb enough (no regrets though. I'm happy in my stupidity) to want to get into the animal care field. There are other days, however, when I worry that if a surgery existed, going for that option would lead to my remaining vision being lost or other consequences.
There are a lot of challenges that I (and many others) have had to face to carve out places in a world that isn't always accommodating to people with disabilities. It can 100% be done, but I won't lie and say it will always be easy for you or your daughter. I can tell that you both are going to be amazing parents for her. No matter what route you end up going with, don't limit her. Raising her will be different. My family did their best to let me figure out how I needed to do things and let me do almost anything sighted peers did. They didn't put limits on what I could and couldn't do as a partially blind child, and that really helped me deal with a lot of the beliefs that many able bodied people hold about what I should be able to do.
I'm sorry if this was too long and rambly. It's hard to get all of my thoughts out in a coherent manner sometimes. If you have any questions or just want to reach out, please don't hesitate. I don't have experience with your situation, but I'd be more than happy to provide any info or assistance that I can! Best of luck with whatever you choose.
futurephysician 2 points 1y ago
My father saw the same cloudiness in my eyes as a baby and insisted on getting me to an eye doctor asap. As a result of his stubborn persistence, I have some vision left. Be persistent and insist on getting tested for glaucoma.
Aggressive-Yoghurt31 2 points 1y ago
I was born with congenital cataracts, which means cloudy lens instead of cloudy cornea. I remove them both when I was four months old. put on some glasses and my vision acuity was almost perfect. does that mean that your daughter will also have perfect vision? No unfortunately when we're talking about medicine there are never guarantees, so the next thing you have to ask is what will we lose if we try? I believe that surgeries have gotten very safe the past decade and although complications may arise they will only be related to the eye, for example you may need to have another transplant or maybe a transplant every five years I am no medical expert. But if you try I think the worst case scenario is her losing her eyes. Unfortunately 18 years after having normal site my retina decided to detach in both eyes for unknown reasons, I had to do 19 surgeries trying to maintain any site but we failed and I now have only light perception, I hate every single moment of that period and it was probably and will be the worst 12 months I've ever had in my life but I wasn't about to go down without a fight. I think your daughter is very lucky to have you as parents and no matter what you choose, never look back it will help no one
annolot 2 points 1y ago
My DD is 1 years old. She had the same procedure done for congential cataracts (twice actually since the first time the cataracts came back....they called it secondary cataracts). They did it when she was 1 month and about 3 months old. I am sorry about the retina detachment you experienced 18 years later!! I can only imagine how difficult that must have been.
Can you give me some advice on what life was like with glasses after your catracts surgery and before your retina detachment? Did you ever have contacts (by itself or in addition to glasses)? Did you have any negative (or positive experience) as a child from other kids due to the thickness of the glasses?
It's been a long year and I'll always worry about DD's eyes and other eye issues that could occur (such as retina detachment like you had). But I guess at the moment I'm just worried about how she will see and feel growing up. Thank you for sharing anything you can with me.
Can you give me some advice on what life was like with glasses after your catracts surgery and before your retina detachment? Did you ever have contacts (by itself or in addition to glasses)? Did you have any negative (or positive experience) as a child from other kids due to the thickness of the glasses?
It's been a long year and I'll always worry about DD's eyes and other eye issues that could occur (such as retina detachment like you had). But I guess at the moment I'm just worried about how she will see and feel growing up. Thank you for sharing anything you can with me.
Aggressive-Yoghurt31 1 points 1y ago
honestly and for me that was normal life I never thought of it as something different, and I never had contacts, always glasses, I wore them all day and I had very little insignificant problems for example them breaking and having to get new ones, I never really received many comments about my glasses and they offered me site and insignificant little comments or having to take them off every night is absolutely nothing, there is no problem there. There will be no difference in your babies life, that is assuming she can put on the pair of glasses and see fine, and don't worry a lot about possible complications later in life because I was a very extreme case probably unique, nowadays retinal detachment are easily treated and just visit your ophthalmologist frequently, So what I'm trying to say is glasses or no glasses does not determine Life quality
kramwam 2 points 1y ago
>a “normal” life experience
Blind or not, both can achieve that. Don't think she will be weaker because her eyesight won't be perfect. Actually it makes people stronger when they have challenges in their lives.
Blind or not, both can achieve that. Don't think she will be weaker because her eyesight won't be perfect. Actually it makes people stronger when they have challenges in their lives.
SiriuslyGranger 2 points 1y ago
I am totally blind and have lived a very fulfilled life. Life doesn’t stop with just being blind. Everyone agrees that I’ve lived a very full 29 years of my life heh! :D and I am totally blind and that doesn’t stop me.
I’ve traveled in 2 weeks to 6 different states by myself completely independently. And I didn’t just sit in an hotel room or enjoyed my hotel I went sight seeing and to different places. It’s totally fun and doable. I went to 2 or 3 things a day sometime. Sometimes I look back and wondered if it was a vacation or more work. Sometimes my schedule was so packed but I had fun. And I did it with minimal help. I even went out for pizza in the middle of the night. So funny. Not funny then. I was almost stranded in new york until I found out about the path trains. Oh thank God I can get back at the dead of night? :D
I had a recent post recently about enjoying a car show and most of it was pretty independent and it was actually really cool.
I have been on all sorts of advocacy panels even with the the big wigs at a university, and I was the loudest and most consistent advocate. I have been on many type sports trips with this blind organization and represented them as a teenager.
I ran around a university passing out newspapers at one point. I have lots of schooling and classes under my belt a few degrees one in political science, one in English creative writing, and now going for a computer science.
I have done a lot of education of the blind.
I served as a computer lab help desk person, I’ve taught assistive technology, I’ve been on a short film about disabled people.
I have been to another country by myself and wondered around the city. And met an online friend. My parents friends were just about stunned. You made it down there across the whole big place yourself. So it’s a big territory or city with three smaller cities and I made it to the furthest one.
I have done literally everything.
Blindness doesn’t stop me and doesn’t hold me back and I know it, people know it, and literally in every sense of the word. I don’t sit at home. I have been out serving my community. I dont live a boring life.
Now I am teaching myself to program and stuff. Probably least of the adventures.
So fear not if your daughter is blind even totally blind this shouldn’t be a problem. Just don’t coddle her, teach her all the skills you need, don’t shelter or limit her treat her like any other jane and you should be good. Let her do all the chores you may have to make adaptations but let her do everything a normal child would and more. The world is hers. Teach her cane skills early, braille, technology and independent life skills when things come up. Don’t tell her or limit her in the kitchen. Let her clean the bathroom and house.
Don’t just hang with blind people. But also teach her to be proud of her blindness and it’s a total gift from God.
Go her!
P.s. I go to church tomorrow and I am part of the greet staff so I welcome and listen to people come in and people say I am extremely good at it.
Feel free to reach out for support or questions or just any more encouragements. Chats are opened.
I’ve traveled in 2 weeks to 6 different states by myself completely independently. And I didn’t just sit in an hotel room or enjoyed my hotel I went sight seeing and to different places. It’s totally fun and doable. I went to 2 or 3 things a day sometime. Sometimes I look back and wondered if it was a vacation or more work. Sometimes my schedule was so packed but I had fun. And I did it with minimal help. I even went out for pizza in the middle of the night. So funny. Not funny then. I was almost stranded in new york until I found out about the path trains. Oh thank God I can get back at the dead of night? :D
I had a recent post recently about enjoying a car show and most of it was pretty independent and it was actually really cool.
I have been on all sorts of advocacy panels even with the the big wigs at a university, and I was the loudest and most consistent advocate. I have been on many type sports trips with this blind organization and represented them as a teenager.
I ran around a university passing out newspapers at one point. I have lots of schooling and classes under my belt a few degrees one in political science, one in English creative writing, and now going for a computer science.
I have done a lot of education of the blind.
I served as a computer lab help desk person, I’ve taught assistive technology, I’ve been on a short film about disabled people.
I have been to another country by myself and wondered around the city. And met an online friend. My parents friends were just about stunned. You made it down there across the whole big place yourself. So it’s a big territory or city with three smaller cities and I made it to the furthest one.
I have done literally everything.
Blindness doesn’t stop me and doesn’t hold me back and I know it, people know it, and literally in every sense of the word. I don’t sit at home. I have been out serving my community. I dont live a boring life.
Now I am teaching myself to program and stuff. Probably least of the adventures.
So fear not if your daughter is blind even totally blind this shouldn’t be a problem. Just don’t coddle her, teach her all the skills you need, don’t shelter or limit her treat her like any other jane and you should be good. Let her do all the chores you may have to make adaptations but let her do everything a normal child would and more. The world is hers. Teach her cane skills early, braille, technology and independent life skills when things come up. Don’t tell her or limit her in the kitchen. Let her clean the bathroom and house.
Don’t just hang with blind people. But also teach her to be proud of her blindness and it’s a total gift from God.
Go her!
P.s. I go to church tomorrow and I am part of the greet staff so I welcome and listen to people come in and people say I am extremely good at it.
Feel free to reach out for support or questions or just any more encouragements. Chats are opened.
CosmicBunny97 2 points 1y ago
My cornea is scarred and thickened after surgery in 2020. My doctors and I both agreed that my eye is too weak for a corneal transplant, and even then I'd rather not get one anyway. It sounds painful and I don't like the risk of rejection. For the most part, I'm happier now blind than I was more low vision. But it's up to you. Your child can have a happy life without the corneal transplant or with.
Mirage32 2 points 1y ago
Why are you happied blind than when you were low vision?
CosmicBunny97 4 points 1y ago
Stability. No more annoying glaucoma treatments, I was allergic to most of the eye drops. No more sensitivity to light, wearing glasses, or taking forever to read things because I need to zoom in. I’m so much more efficient in a screen reader. I know it’s strange, someone being happy about being blind, but I am.
Edited to add: I feel like it’s part of my identity that I’m blind. No more feeling in between the sighted and blind worlds. I don’t think that’s a bad thing and I’ll happily own my identity, just as someone who’s another disability or LGBT. Being blind is nothing to be ashamed of.
Edited to add: I feel like it’s part of my identity that I’m blind. No more feeling in between the sighted and blind worlds. I don’t think that’s a bad thing and I’ll happily own my identity, just as someone who’s another disability or LGBT. Being blind is nothing to be ashamed of.
theGIRTHQUAKE [OP] 1 points 1y ago
I really appreciate your perspective. As I've responded to another user, one of our biggest concerns is that she'd end up with nothing but chronic pain and complication, without benefit to her sight. It sounds like, for you, wholesale acceptance of being without sight was the key to happiness, which makes a lot of sense.
Can I ask what the surgery was that scarred and thickened your cornea?
Can I ask what the surgery was that scarred and thickened your cornea?
CosmicBunny97 1 points 1y ago
Yeah, I truly believe you can be happy without sight. Beats chronic pain. Also, in response to another commentor who said they went through 19 surgeries... no thanks.
I had cornea problems before, but at the same time had a retinal detachment in 2019 (I've got retinopathy of prematurity). Also wasn't aware that my retina was detaching, but that's a long story. I had one surgery to fix the retina and then another to take the oil out because my eye wasn't happy with it lol. No idea how it made my cornea so... scarred, though.
I had cornea problems before, but at the same time had a retinal detachment in 2019 (I've got retinopathy of prematurity). Also wasn't aware that my retina was detaching, but that's a long story. I had one surgery to fix the retina and then another to take the oil out because my eye wasn't happy with it lol. No idea how it made my cornea so... scarred, though.
New_mama_in_2022 1 points 11m ago
I’m in the exact same situation. My baby was born in March 2022 and was diagnosed with congenital cornea opacity. It’s in both eyes but only really affects the right eye as it is scarred over the pupil. We have been seeing a corneal disease specialist in upstate NY. Which state are you from? Who have you been seeing?
theGIRTHQUAKE [OP] 1 points 11m ago
I’m sorry to hear that—can absolutely empathize with what you’re probably going through. We live in Vegas, but ended up taking her to the University of Utah/Primary Children’s Hospital (Moran Eye Center) in Salt Lake. Even though it’s a 6-7hr haul with a baby, they have been incredible every step of the way and I’d recommend them without hesitation to anyone in the western US…but they share the top pediatric corneal specialist spots in the country with a handful of institutions in the east as well, so I’m sure you could find top-tier care much closer to NY. Definitely look for an academic or specialized pediatric institution, and not just a local corneal surgeon, insurance-allowing.
We agonized over the choice for months, but it sunk in with a second-opinion visit (Children’s Hospital of LA, also very highly recommended for pediatric ophthalmology and corneal surgery) that we had to try *something.* So then the choice became weighing the pros and cons of a full thickness PK vs. partial-thickness DSEK transplant. Based on our specific situation and lots of discussion with her doc and surgeon, we ultimately decided on a full-thickness transplant.
It was done 9 days ago (at 15 weeks and 4 days) and went beautifully, and so far is healing perfectly. Obviously it could go downhill any time or last for years but right now, other than the challenges of dealing with a baby that is obviously uncomfortable/in some amount of pain, has to wear a cumbersome eye protector, must be awakened/handled every couple of hours for eye drops, and has to have her arms almost continuously restricted in some manner to prevent her from touching her eye, things are going as well as could be reasonably hoped for.
I will say, on top of having a newborn to begin with, this will add a whole new layer of stress test to your sanity and/or relationship. I have an incredible wife/mama and we’re managing well, but damn—it’s tough at times. But, as of this post, I’d choose to do it all again for our daughter.
We agonized over the choice for months, but it sunk in with a second-opinion visit (Children’s Hospital of LA, also very highly recommended for pediatric ophthalmology and corneal surgery) that we had to try *something.* So then the choice became weighing the pros and cons of a full thickness PK vs. partial-thickness DSEK transplant. Based on our specific situation and lots of discussion with her doc and surgeon, we ultimately decided on a full-thickness transplant.
It was done 9 days ago (at 15 weeks and 4 days) and went beautifully, and so far is healing perfectly. Obviously it could go downhill any time or last for years but right now, other than the challenges of dealing with a baby that is obviously uncomfortable/in some amount of pain, has to wear a cumbersome eye protector, must be awakened/handled every couple of hours for eye drops, and has to have her arms almost continuously restricted in some manner to prevent her from touching her eye, things are going as well as could be reasonably hoped for.
I will say, on top of having a newborn to begin with, this will add a whole new layer of stress test to your sanity and/or relationship. I have an incredible wife/mama and we’re managing well, but damn—it’s tough at times. But, as of this post, I’d choose to do it all again for our daughter.
Jumpy_Ad7626 1 points 1y ago
New to reddit and late compared to all others, but still I might have something to add. My most important points first before I dive into my life story (sorry this became looong and unstructured but I like to be precise):
* No case of corneal disease is comparable, even if it's the same genetic condition. What applies to others might not apply to you. Psychology also plays into that.
* 'Partial transplants' as you call it, aka lamellar transplants where the goal is to only replace part of the cornea, drastically reduced the risk of rejection and also other complications. They used to barely operate on infants/newborns because the risk of rejection was so high and the prognosis was that you could only do 3 transplants in a lifetime and then it wouldn't succeed anymore. That isn't true anymore. However, please find out if they plan to do DMEK or DS(A)EK (or another procedure but I suspect one of these two). DMEK is more state of the art and superior as wound edges should be cleaner, but some surgeons might still do DSEK because they are more comfortable with it and would rather opt for that when they already have the challenge of operating on an infant. You can always go for a second opinion.
* The greatest risk is secondary glaucoma due to anti-rejection therapy, and cataracts. The glaucoma can be well-avoided if you often go to checkups and they can measure intraocular pressure non-invasively nowadays (with a hand-held device, without burning eye drops, so no drama). If you don't keep an eye on it, optical nerve damage ensues, which can lead to full blindness and is not reversible. Grafts can always be redone and techniques improve rapidly, but regrowing the optical nerve is not yet within the realm of possibilities. You don't feel too high IOP (I didn't) and only notice vision changes when there is already substantial damage.
* Doctors might tell you that surgery has to be done asap, else her brain 'won't learn to see', but this isn't necessarily true. It depends how serious the clouding is perhaps and if there are moments at which the corneas are more clear, but it's actually impossible to tell at infant age. You can always have it done later, imho. I got my first graft at 12 and was told I would never get to 100% vision because my brain didn't learn that, but I got there in the past few years with one eye. The brain is more plastic than previously thought. However I am not a medical expert and perhaps there are documented cases where they were 'too late' and the eye functioned on paper but the person still didn't see more than a blur. You are always free to ask for more details to your medical professional.
Ok this became longer than I thought, my weakness. Then now for why I think I have something useful to say: I am a 32-year-old woman from the Netherlands with CHED (actually harboyan syndrome, that is CHED with sensorineuriinal hearing loss). I've had a total of 5 corneal graft surgeries, three full transplants (penetrating keratoplasty, PK) and two lamellar ones where they only replace the innermost layer (DMEK). Due to lack of checkup from both my side and the medics' side I have advanced glaucoma in one eye due to steroid-responsive intraocular pressure rise. The other eye had too high pressure for shorter timespans so has no noticeable damage. I also have noticeable cataract in this eye but chose to not have cataract surgery, since it would also make me lose my ability to accommodate. I am also stuck with custom-made contact lenses that are not very comfortable, due to the irregular corneas as a result of inverted mushroom PKs.
So, I got my first corneal graft at 12 years old in the right eye. Due to moisture evaporation, my corneas always cleared up over the course of the day. However, this worsened, so eventually a graft was necessary so that I could keep going to a regular school. My parents were very skeptical about the graft surgery as well, and the blind help organization they went to thought they were crazy. Due to the prognosis back then, they wanted to postpone it as long as possible, also my left eye waited until I was 22. That prognosis was: a graft holds on average 15 years, and you can only do it 3 times. However, nowadays, because they can do DMEK and replace only the layer that needs replacing (the endothelium which dies off over time and eventually cannot keep the cornea clear anymore), prognosis is much better. DMEK has much lower risk of rejection.
That saved my life, because I am very visually oriented and attached to my eyesight, however I have had trouble with rejection (1 slow rejection with eventual graft failure, and one rejection episode, which reduced the lifespan of the graft to only 2 years thereafter). Even when I was clinically blind as a kid, I protested against that 'fact', because I could see shapes and colors perfectly well and my brain filled in details. Very important: blind on paper does not mean you don't see anything. It just means you cannot recognize preset details, but there is still a huge difference between clinical blindness (less than 10% measured vision) and literally not being able to see anything or only having light/dark perception. What you see could be compared to looking to ground glass.
* No case of corneal disease is comparable, even if it's the same genetic condition. What applies to others might not apply to you. Psychology also plays into that.
* 'Partial transplants' as you call it, aka lamellar transplants where the goal is to only replace part of the cornea, drastically reduced the risk of rejection and also other complications. They used to barely operate on infants/newborns because the risk of rejection was so high and the prognosis was that you could only do 3 transplants in a lifetime and then it wouldn't succeed anymore. That isn't true anymore. However, please find out if they plan to do DMEK or DS(A)EK (or another procedure but I suspect one of these two). DMEK is more state of the art and superior as wound edges should be cleaner, but some surgeons might still do DSEK because they are more comfortable with it and would rather opt for that when they already have the challenge of operating on an infant. You can always go for a second opinion.
* The greatest risk is secondary glaucoma due to anti-rejection therapy, and cataracts. The glaucoma can be well-avoided if you often go to checkups and they can measure intraocular pressure non-invasively nowadays (with a hand-held device, without burning eye drops, so no drama). If you don't keep an eye on it, optical nerve damage ensues, which can lead to full blindness and is not reversible. Grafts can always be redone and techniques improve rapidly, but regrowing the optical nerve is not yet within the realm of possibilities. You don't feel too high IOP (I didn't) and only notice vision changes when there is already substantial damage.
* Doctors might tell you that surgery has to be done asap, else her brain 'won't learn to see', but this isn't necessarily true. It depends how serious the clouding is perhaps and if there are moments at which the corneas are more clear, but it's actually impossible to tell at infant age. You can always have it done later, imho. I got my first graft at 12 and was told I would never get to 100% vision because my brain didn't learn that, but I got there in the past few years with one eye. The brain is more plastic than previously thought. However I am not a medical expert and perhaps there are documented cases where they were 'too late' and the eye functioned on paper but the person still didn't see more than a blur. You are always free to ask for more details to your medical professional.
Ok this became longer than I thought, my weakness. Then now for why I think I have something useful to say: I am a 32-year-old woman from the Netherlands with CHED (actually harboyan syndrome, that is CHED with sensorineuriinal hearing loss). I've had a total of 5 corneal graft surgeries, three full transplants (penetrating keratoplasty, PK) and two lamellar ones where they only replace the innermost layer (DMEK). Due to lack of checkup from both my side and the medics' side I have advanced glaucoma in one eye due to steroid-responsive intraocular pressure rise. The other eye had too high pressure for shorter timespans so has no noticeable damage. I also have noticeable cataract in this eye but chose to not have cataract surgery, since it would also make me lose my ability to accommodate. I am also stuck with custom-made contact lenses that are not very comfortable, due to the irregular corneas as a result of inverted mushroom PKs.
So, I got my first corneal graft at 12 years old in the right eye. Due to moisture evaporation, my corneas always cleared up over the course of the day. However, this worsened, so eventually a graft was necessary so that I could keep going to a regular school. My parents were very skeptical about the graft surgery as well, and the blind help organization they went to thought they were crazy. Due to the prognosis back then, they wanted to postpone it as long as possible, also my left eye waited until I was 22. That prognosis was: a graft holds on average 15 years, and you can only do it 3 times. However, nowadays, because they can do DMEK and replace only the layer that needs replacing (the endothelium which dies off over time and eventually cannot keep the cornea clear anymore), prognosis is much better. DMEK has much lower risk of rejection.
That saved my life, because I am very visually oriented and attached to my eyesight, however I have had trouble with rejection (1 slow rejection with eventual graft failure, and one rejection episode, which reduced the lifespan of the graft to only 2 years thereafter). Even when I was clinically blind as a kid, I protested against that 'fact', because I could see shapes and colors perfectly well and my brain filled in details. Very important: blind on paper does not mean you don't see anything. It just means you cannot recognize preset details, but there is still a huge difference between clinical blindness (less than 10% measured vision) and literally not being able to see anything or only having light/dark perception. What you see could be compared to looking to ground glass.
Jumpy_Ad7626 1 points 1y ago
(please read below first, this just didn't fit all in one post, sorry, this is the last part). Then my personal 2 cents on whether surgery will be worth it: in my opinion, yes, eyesight is a great gift and I know many people who are very thankful for it. I was always very visually oriented and rely a lot on my eyesight in my daily life and in my career. Being annoyed by not knowing what the hell was so interesting about my condition inspired me to become a scientist myself and strive to contribute to cornea research or at least cornea patient care in some way. Despite complications and periods of low eyesight, I obtained a Master's degree in chemistry cum laude in the Netherlands, then a doctorate in biophysical chemistry, magna cum laude, in Germany, and I now just started as a postdoctoral researcher in physical virology (part of clinical microbiology) in northern Sweden. Beside my expertise as a now interdisciplinary scientist, I am aware of all the literature on my very rare condition (and a bit lonely in that because most doctors don't know, if they know CHED by know they still don't know Harboyan Syndrome). I try to grow towards cornea-related research in my career, and I have the feeling that the research I am going to conduct in my postdoc might lead me there. It is not in my nature to be 'thankful' because that feels too passive to me and I don't see doctors as gods but rather as equals with a different education and humans who also make mistakes, which often makes me feel like I have to be alert all the time before they make a mistake. But, I am happy that I can see fairly well so that I could get where I am now. With difficulty and near-burnout and crippling selfdoubt at times, but still, I got to a place where I am at ease with the people around me, with my most likely non-neurotypical brain (something undiagnosed in the corner of HSP/gifted/autism).I've seen the healthcare system of two neighbouring countries and now am going to get familiar with a third. I found that I received better care in Germany than in the Netherlands, probably due to the culture of going to the doctor for every fart, where the culture in the Netherlands is that it needs to be cheap and quick (and also in Sweden, or so I heard). Still, all three countries are known to have top notch universal healthcare. So, the healthcare system in your country is very important too for your decision to do the surgery not, not now, or now: can you afford the care, is it covered by insurance? Or can you only afford the surgery? Do you have access to state of the art care? I've been treated in Rotterdam and Cologne by some of the best surgeons in the world (but not by Dr. Melles, the father of DMEK, whose philosophy it is to give as minimally invasive treatments as possible). If you are able, get at least a second opinion from one of the best surgeons in your country before you have someone operate on your baby. And ask all the difficult questions. What are the risks? What is the prognosis? What is very likely to happen? Why did they make a particular choice? How are they going to prevent glaucoma?If my educated guess is correct, I would urge you to decide between 'not now' and 'yes now' rather than between 'yes' and 'no'. Your daugther really has good chances to lead a very normal life, with her condition being barely noticeable most of the time. Also if you decide to wait until she is 10 or wait until it is more clear how much she actually sees. Discuss pros and cons with the specialist: as a baby she won't have any memory of all the aftercare and the fuss and hopefully by the next graft she will be old enough to handle all the medication herself responsibly. As a toddler there might be a more drama about the restrictions and medication and trouble with your parent-child relationship.Of course it can go wrong but chances are very low, and many risks are also preventable. Additionally, your daughter most likely won't have the complications/annoying side effects that I have had, due to more modern techniques than what was available for me 20 years ago. And despite all the trouble I had, I still find it worth it and I am able to do what most people did. I however do have lasting social trauma and delayed development from lack of eyesight and being different up to my early teens (but that was also due to the hearing loss, which is unfortunately harder to fix). This is what your daughter probably won't have to go through:- with the lamellar transplant (DMEK or DSEK), the cornea does not become as vulnerable as with a PK, so much less risk of needing a regraft because of impact on her eye. This didn't happen to me but it's quite a serious risk and some doctors even used to go as far as to try to deter their patients from playing sports. Also during the time of my PKs, the general advice was to wear glasses for protection at all times. This has changed, becoming a cornea patient for life is much less restrictive now. And even when it was, me and my parents didn't listen to all the restrictions all the time and I was fine.- Much of her own tissue will be retained, only a few small cuts will be made. This likely means, no irregular cornea and need for scleral or other hard contacts. Those lenses also increase risk of infection and it is hard to get a young person to take good enough care of the contacts. I have also learned some things the hard way.- Grafts hold on average 15 years, mine held 9 and 11 years until now (the DMEKs now 6 years and one year and counting). However, I know several people for whom they held for 14 years. And with current techniques, average lifetime might be higher now, and it might be possible to prolong lifetime by injecting extra cells endothelial policlinically in the next 10 years. Or growing a personalized endothelium in a petridish, which would eliminate the need for medication and the side effects to prevent rejection (so also, no or much later cataract development?)- In my case, it turns out my stroma (the body of the cornea) is slightly hazy despite the DMEKs (grafted endothelia) work. Sometimes grafts get hazy anyway, even though the endothelium works. That was a shock to me, because I thought I was saved from more stress and balancing rejection repression with risk of more glaucoma by the invention of the DMEK. However, your daughter won't have full-thickness grafts, her own cornea will be preserved for the most part, so this won't happen. If this lamellar graft works, that is all she will need to get for the rest of her life, or even less invasive techniques.Good luck with whatever decision you make (apologies if I disturb you now while you already made a decision). Remember, you can always decide not to do it, even in the last moment. You have to give informed consent for the procedure, and as long as you have so many questions or are falsely informed (such as 'guaranteed complications' while the only thing that is more or less guaranteed is cataracts which is very well treatable), you cannot give informed consent. My inbox is always open if you want more explanation.
Jumpy_Ad7626 1 points 1y ago
I said above every case is different, but from the fact that you mention testing for CHED and 'partial transplant', I suspect your daughter has some form of endothelial dystrophy. This means, the endothelium is not able to keep water out of the cornea, so it swells and becomes cloudy. Optically transparent and strongly refractive (the thin cornea is responsible for 70% of your eye's optical power!), corneal tissue has one weakness: it is composed of carefully arranged highly charged biopolymers, which strongly attract water by nature. The endothelium is a single layer of cells on the inside of the cornea, and has the tremendous task to continuously pump water out. These cells cannot divide and slowly die off over time. In most people, this does not become a problem during their lifetime (except in Fuchs dystrophy which develops at later age). Or 'congenital' dystrophy, where the endothelium already cannot keep up at birth.
Anyway, because she most likely has an endothelial dystrophy, there is another point you should consider, beside the lack of eyesight: the swelling of the cornea can also cause blisters of water to form ('bullae') which can burst. Doctors say the bursting is painful, in my experience, the presence of the blisters is more painful and is rather relieved as they burst. The surface of her corneas can be damaged and susceptible to infections, and above all, sensitive up to the point of painfulness. Due to the stress on the cornea, she will also be sensitive to light. My mother has told me that I cried when sitting in the sun and they didn't know why. Light sensitivity isn't entirely understood, but my personal experience is that you are more light sensitive if your cornea is irritated (such as with bullous keratopathy as the blisters phenomenon is called, or during infection, or just after surgery). Bullous keratopathy may result in scarring in its extreme form, which reduces eyesight and makes full PK more necessary, but also more difficult.
However, a doctor can tell you if bullous keratopathy is present or not, so this is not necessarily a reason to proceed with surgery asap. Rather a warning, that blindness is not all your daughter may (come to) suffer from, if my educated guess about her condition is correct. In my experience, the pain of surgery is similar or not much worse than with bullous keratopathy, and it rapidly improves after the first 2 days. The trauma of birth is probably greater than the trauma of this surgery. More and more often recurring bullous keratopathy was the reason I had my second eye done at 22, while the plan was to postpone it as long as possible.
Anyway, because she most likely has an endothelial dystrophy, there is another point you should consider, beside the lack of eyesight: the swelling of the cornea can also cause blisters of water to form ('bullae') which can burst. Doctors say the bursting is painful, in my experience, the presence of the blisters is more painful and is rather relieved as they burst. The surface of her corneas can be damaged and susceptible to infections, and above all, sensitive up to the point of painfulness. Due to the stress on the cornea, she will also be sensitive to light. My mother has told me that I cried when sitting in the sun and they didn't know why. Light sensitivity isn't entirely understood, but my personal experience is that you are more light sensitive if your cornea is irritated (such as with bullous keratopathy as the blisters phenomenon is called, or during infection, or just after surgery). Bullous keratopathy may result in scarring in its extreme form, which reduces eyesight and makes full PK more necessary, but also more difficult.
However, a doctor can tell you if bullous keratopathy is present or not, so this is not necessarily a reason to proceed with surgery asap. Rather a warning, that blindness is not all your daughter may (come to) suffer from, if my educated guess about her condition is correct. In my experience, the pain of surgery is similar or not much worse than with bullous keratopathy, and it rapidly improves after the first 2 days. The trauma of birth is probably greater than the trauma of this surgery. More and more often recurring bullous keratopathy was the reason I had my second eye done at 22, while the plan was to postpone it as long as possible.
yamallama0330 1 points 1y ago
If you decide to not undergo surgery, it’s so good to hear that you’ll support her to the fullest. I know that’s how most of us got to where we are, and I know this is a very scary and new experience for you. Get her into Orientation & Mobility and Braille training as soon as possible, while kids her age are learning to write letters she could learn to recognize the Braille symbol. I don’t know what state you’re in but reach out to vision services in your area, they would be more than happy to guide you. :)
MusicLover035 1 points 1y ago
Hey! There's already been some really great advice given to you, but I'd suggest getting your daughter tested for glaucoma. I'd also talk to multiple specialists to make an informed decision on what you could do. Transplants can work and are really, really great when they do work for the person needing the transplant, but when they fail it's the worst (I've been through it and absolutely hated it).
Do what feels right, and reach out to tons of specialists, or at least get a second and third opinion for your daughter before you go through with anything else. Best of luck!
Do what feels right, and reach out to tons of specialists, or at least get a second and third opinion for your daughter before you go through with anything else. Best of luck!
futurephysician 1 points 1y ago
Sounds like glaucoma.
RobbieC69 1 points 1y ago
Hi
I would take on board what your daughter's eye specialist is telling you only. I know it's hard for you both just now, but your local doctor might not be an eye specialist, so I would be cautious.
You may want to ask the eye specialist if it would be better to leave the transplant until at least she is 12 to 18 months old, just in case her eyesight corrects itself.
I have Congenital Nystagmus; undeveloped eye muscles causing shaky eyes. Now a-a-days there is a high level of a successful operation to correct it, so please take on board that if you choose to go the medical route, this may be very successful; but you should of course be aware that any operations can turn out unsuccessful or result in very little change.
Whatever decision has to be made; this can only be made by yourselves. I wish your family all the best.
I would take on board what your daughter's eye specialist is telling you only. I know it's hard for you both just now, but your local doctor might not be an eye specialist, so I would be cautious.
You may want to ask the eye specialist if it would be better to leave the transplant until at least she is 12 to 18 months old, just in case her eyesight corrects itself.
I have Congenital Nystagmus; undeveloped eye muscles causing shaky eyes. Now a-a-days there is a high level of a successful operation to correct it, so please take on board that if you choose to go the medical route, this may be very successful; but you should of course be aware that any operations can turn out unsuccessful or result in very little change.
Whatever decision has to be made; this can only be made by yourselves. I wish your family all the best.
GTbuddha 1 points 1y ago
I have had many eye surgeries in my lifetime 40+. I have only ever had two partial cornea transplants. They went great! Easiest eye surgeries of my life and improved my vision a ton.
Best of luck to you and your family.
Best of luck to you and your family.
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