Hello, my little girl who was born on 22/12/2011 was born with cataracts. She has just had an operation on both eyes to remove the lence. Next week we are going to learn how to put contact Lences in for her. Nancy is now 8 weeks old, has any got any advice/story's who is in the same boat? Many thanks :) x
Janece - posted on 01/18/2013
My daughter was born with Bilateral Congenital Cataracts. She was diagnosed right after delivery. Her first surgery was at 2 weeks old and second at 3 weeks old. She received her first pair of contacts at 4 weeks old. She is now an active happy 6 1/2 years old. We have gone through MANY pairs of contacts and reading glasses. S I myself had cataracts at the age of 5, back in the 80's my mom was told that it was due to her being exposed to Measles while pregnant... which with lots of research can be true but since my little angel came out with them, we have now discovered it is hereditary. I remember when she was soo tiny having to put her to sleep and lock her down in the carrier to put in and take out her contacts. I remember the hardest stage being between 1 and 2 years old. Because she didnt understand and would fight us. But after 2 she thought it was a game and i would wrap her in a blanket like a burrito and my husband would remove the lenses while i would sing or talk to her... When she turned 5 she decided they would be a cool thing to show at show and tell... That was a fun phone call to receive from the teacher asking us to talk to her about taking them out at school. :) Now she takes them in and out all by her self (well will some supervision). She is getting the artifiical lenses put in this summer due to her being a swimmer. I think that our process may have been a little easier bc I know what she can and cant see because i have no lenses either. I have worn contacts or really thick glasses all my life due to the fact they didnt have artifical lenses in the 80's when mine were removed. I was always so angry that I coudnt see like others. Little did I know God was preparing me to take care of the precious little angel he gave me. I am now 7 weeks pregnant with our second, we waited just because of the 50/50 chance of it happening to our next. But we decided that we have been through it once and survived and have the most amazing little girl. We dont want to miss out on having another blessing.. Our daughter is soo EXCITED about being a big sister, She told us that if the baby has special eyes it is ok bc she will teach he/she what to do.
Theresa - posted on 01/15/2013
Wow, you and your son are so very brave! I am sorry to hear that the surgery had to be repeated so many times and that he is allergic to the patch;( Is he allergic to many other things? My son has food allergies and animal allergies. I hope that things improve in the near future for his cataracts treatment. Good Luck!
My son had cataracts in one eye only and his surgery has been a success so far, (fingers crossed). Patching is difficult, he is one year now and rips the patch off so now I put medical tape over it. The contact is going well and I guess he will get glasses soon;)
Sarah - posted on 01/09/2013
My daughter had congenital bilateral cataracts. They were not noticed untile she was 4 months old and were immediatley removed. Her 2nd birthday is now approaching and she has been wearing gas permiable contact lens (Hard lenses) since she was 5 months old. It was a NIGHTMARE at first. One hour to put them in, one to take them out. All the while she fought us every secodn of the way. I will never forget after 30 minutes of fighting I got the contact in only to realize I'd put the lens in the wrong eye!!!
She is a champ now and actually asks for her contacts :) We have had trouble with them coming out during the day and therefore constantly needing replacements which is not the cheapest thing! So doctor has decided its time to have the lens implanted.
I feel the emotions of diagnoisis resurfacing.
Aimee - posted on 09/29/2012
My son is now 4 and was born with a cataract in his right eye, he had surgery at 5 weeks. He cataract and lens were removed successfully, I'm not going to lie, seeing him have the anaesthetic was the worst part of the whole experience and I really urge mothers to consider letting someone else (a partner maybe) to go with them. However your babies really are in good hands!! These surgeons definitely know what they're doing, my son still has to have regular visits to the consultant who operate on him and will require further surgery in the future due to being diagnosed with glaucoma shortly afterwards. My son was one of the unlucky ones who has had to go through over 20 anaesthetics and surgeries and is completely blind in his right eye (he was allergic to plasters so we could not patch him without horrific blisters, I have put drops in his eye, taken his pressure myself and done the whole glasses and contact lens thing for years so I can help with any questions.... Just to let you know although he has been through all this, my son is not effected at all, in fact he makes me wonder why I panic so much. His eye (which is a different colour to his other) is what he refers to as his 'magic eye' and he really does have the same quality of life as every other child. He will have to have further surgeries but knows no different and goes to the hospital calmer than I do, I don't want to panic anyone, I just want to put across that whatever happens, it will be ok in the end and my son is a shining star that shows just how ok your precious babies will be.
P.s I am always an email away if anyone wants to talk or get advice, I just hope my experiences will help someone somehow firstname.lastname@example.org
Jolene - posted on 09/16/2012
hi my son was born with congential catracts in both eyes he has had both removed wen he was a month old and he is now ten months old he has to wear contact lenses to but me or the dad have to put them in we go up to the royal victora eye and ear in dublin they put dem in and we are givin drops to but in his eys moring and night and den every 3 weeks we go up and dey re clkean dem by taken de m out and dey put dem bak in for us before we leave d hospital and wen e not wearing dem he wears his glassses so u cud ask for dem to to it for u i suppose but we are luky to have dat support dat we dnt take dem in or out
Bree - posted on 05/14/2012
hi we have just been told our four month old baby girl has cateracts they are being removed on Thursday. I have hardly been told anything yet and am very scared. I would love to talk more with you for support. My email is email@example.com
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