3 month old cataracts

[Mummytime1986]

I have recently found out my 3 month old LB has cataracts. He was born with them abd they have went unnoticed at all his checks (yes, feeling let down and raging that it was not picked up). Being a first time mum I noticed when he was about 1 month old that his eyes were very 'wobbly' but I assumed that this was just him developing his sight.

At his 8 week check with the HV his eyes were checked and I was told all was fine. His 8 week check at the doctors also came back with no problems. Soon after this I started to notice that he wasn't following us around, wasn't focusing as much as I thought he should have been and his eyes just seem to dart around, he also looks like he starting to get a squint.

I took him into the doctors and he told me that in his professional opinion he thinks he has cataracts and will send him to a specialist. 🥺 the word shocked comes to mind but still doesn't cover how I felt.

I went home that night and done about 7 hours of research and learned more from doing that than the doctor told me. It looks like he has congenital cataracts which he has had since birth. The doctor mentioned that he can see 'red reflux' when he checked his eyes which I had no idea what that meant. I found its the 'red eye' you get from photographs and happens when the light from the camera hits the back of your eye and bounces back red. The fact he saw this leads me to believe the cataract is not covering all of his eye/eyes.

The nystagmus and the squint he has more than likely is a result of the cataract/s. Since researching as well I know other things he does/has which were tell take signs but I didn't pick up on.

Does anyone have experience with this I had never heard of baby cataracts before and found its very rare with 1 in 10 000 babies having them and almost 50% go unnoticed at check ups until its to late and damage has been done. I'm looking for any stories anyone has and I want to look at trying to take the steps to give pregnant woman more warning of these and try have more vidulant checks done to stop this being missed.

My son has his specialist appointment next week, he will be 14 weeks old, if he needs surgery then the best chance he would have had was surgery between 6-8 weeks so now I can only hope that his hasn't affected his development to much and we can get it sorted and work extra hard with him.

Very sorry to hear this OP. Hopefully someone will be along with some words of wisdom soon.

If you use Facebook there's a brilliant group called Children with Congenital Cataracts.

They can develop quickly, he should have had checks as a newborn and at 8 weeks and there is a fair chance that the cataracts either developed or become more extensive after these checks took place. This is quite common. Also it is common for cataracts to only partially obscure vision therefore allowing some of the important brain pathways to develop even before removal and treatment.

Visual development continues until kids are 7 or 8 so you have lots of time to work on this. Although there are some benefits to early removal, in many countries its more standard to remove at 11/12 weeks so I wouldn't worry too much about having possibly missed the 6/8 week window.

My ds had a cataract identified at birth (through the standard newborn checks) and removed at 3 weeks old. He wears a contact lens, we have regular optician checks to check prescription and eye pressures (the operation comes with a risk of glaucoma) and he is doing brilliantly.

Do you have specific questions?

Thank you so much for this gave me a little bit of hope and I'll def be joining the Facebook page xx

@Mummytime1986

I have recently found out my 3 month old LB has cataracts. He was born with them abd they have went unnoticed at all his checks (yes, feeling let down and raging that it was not picked up). Being a first time mum I noticed when he was about 1 month old that his eyes were very 'wobbly' but I assumed that this was just him developing his sight.

At his 8 week check with the HV his eyes were checked and I was told all was fine. His 8 week check at the doctors also came back with no problems. Soon after this I started to notice that he wasn't following us around, wasn't focusing as much as I thought he should have been and his eyes just seem to dart around, he also looks like he starting to get a squint.

I took him into the doctors and he told me that in his professional opinion he thinks he has cataracts and will send him to a specialist. 🥺 the word shocked comes to mind but still doesn't cover how I felt.

I went home that night and done about 7 hours of research and learned more from doing that than the doctor told me. It looks like he has congenital cataracts which he has had since birth. The doctor mentioned that he can see 'red reflux' when he checked his eyes which I had no idea what that meant. I found its the 'red eye' you get from photographs and happens when the light from the camera hits the back of your eye and bounces back red. The fact he saw this leads me to believe the cataract is not covering all of his eye/eyes.

The nystagmus and the squint he has more than likely is a result of the cataract/s. Since researching as well I know other things he does/has which were tell take signs but I didn't pick up on.

Does anyone have experience with this I had never heard of baby cataracts before and found its very rare with 1 in 10 000 babies having them and almost 50% go unnoticed at check ups until its to late and damage has been done. I'm looking for any stories anyone has and I want to look at trying to take the steps to give pregnant woman more warning of these and try have more vidulant checks done to stop this being missed.

My son has his specialist appointment next week, he will be 14 weeks old, if he needs surgery then the best chance he would have had was surgery between 6-8 weeks so now I can only hope that his hasn't affected his development to much and we can get it sorted and work extra hard with him.

Hi @Mummytime1986 I hope you don't mind me messaging but my son has just been diagnosed at 10 weeks with a cataract and is having surgery next week. I was just wondering how things were going for you guys?