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Special Needs
Bilateral Cataracts
Was anybody's child born with bilateral cataracts and had surgery to remove them? My 2.5 month DD had her surgeries already and did very well. Just curious about other's experiences.
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Re: Bilateral Cataracts
We have those bubble gum pink miraflex glasses as well! ... its funny to see them on someone else when I'm only used to DD wearing them, but she's a doll!
DD does not have cataracts, but she does have a pretty big group of other vision diagnosis and is legally blind as well as profoundly (in her case totally) deaf in both ears and some pretty significant global delays, all caused by a super rare genetic issue. The dual sensory loss was pretty overwhelming at first, but now it just seems typical. She's three now and super interested in braille (following it left to right and gets SO excited when she finds it in her environment). She's also very motivated by tactile sensations and can identify a lot of things when trailing in her environment. .... Do the doctors know how your daughter's functional vision is after her surgery? Have you signed up with your early intervention program or the department for the blind in your state yet? Our early intervention took a very long time to come through with vision therapy, since its not their typical request, but it was very helpful to be connected with the local vision resources. Our state's school for the deaf and blind or department of education usually handles a separate program targeted specifically for children with vision loss, where they come out and get you set up with any of the tools you need to help LO get access the world around her. Most schools for the blind also have infant play groups. I would have loved to be able to attend ours with DD and connect with other parents if it hadn't have been so far away (3 or 4 hours one way!). Most states have several different programs to help children with vision loss. Please feel free to ask any general vision questions!
Hi! So glad somebody has some similar experiences.
) Abby has a very rare genetic disorder as well -- Hallermann-Streiff Syndrome -- apparently about 300 cases worldwide. Anyways, Abby has her first functional vision evaluation this upcoming Tuesday, January 17th. We are already set up with our local Infant & Toddler Services as well as Children's Center for the Visually Impaired (www.ccvi.org). We're so lucky to only live about 30 minutes away from CCVI and our state school for the blind. I cannot imagine living 3-4 hours away and not really having convient access to the programs.
Right now, Abby's prognosis is good with the glasses and a later surgery in teenage years to put in artifical lenses, but there's also a decent chance she going to develop glaucoma, which will likely lead to blindness. She also has a retinal fold in her right eye -- we don't know about her left eye yet -- so we are going to see a retina specialist about that.
Like you said, it was extremely overwhelming at first, but it is what it is and we don't know our DD's any differently. The only time Abby doesn't her glasses is overnights and I always think she looks so funny withOUT them when I feed her overnight.
When did your DD get glasses? I'm not sure if her other ocular problems would have prevented this, but when you able to tell that your DD was able to "see" things? We got Abby's glasses on December 23rd and she has started to focus at specific spots for about 5-10 seconds, but she still doesn't track things hardley at all. I know that her brain is still learning to really see, so her vision acuity is low. I just wondered what your experiences were with that.