Nystagmus/visual impairment and birth injury

[nsprongs]

Hi,

I was just wondering if anyone had a difficult birth and ended up with babe having a visual impairment as a result of the difficult birth?

For context, my 4 year old boy has nystagmus, a brain disorder affecting the eyes and we had a horrific birth. Nystagmus can be an inherited condition, but we have no known family on either side with the condition.

Induction, then just as I started pushing, they were prepping to do a c section, despite our heart rates being perfectly fine. Four failed ventouse attempts, they then inserted a balloon inside me to shove him back up into the uterus as he had come too low down. It didn't work so they cut me open anyway and pulled him out by the legs. He was born in shock so didn't cry right away, which panicked me. He had an apgar of 4.

I'm sorry you had such a difficult birth. If there's a chance that it could be genetic, have they offered you genetic testing?

Hi, not been referred but I have requested for it.

The ophthalmologist has currently diagnosed it as idiopathic - meaning no known cause.

I've had a dc with a congenital condition and you do look to something to blame, especially yourself.

As far as I can see, birth trauma isn't a listed cause, that's not saying it is never, but it's certainly not a common one. In fact they say often, there isn’t a clear cause. This is called idiopathic nystagmus.

In my dd's case, there is no known cause (she's missing her hand). They have a couple of theories, there are a few genetic conditions (her's isn't) but the actual reason why around 60 children are born with some sort of limb deficiency isn't known in the vast majority of cases.
In some way it feels easier to have a cause. But (20 years down the line now) it would have made no difference except I'd still be looking at the what ifs.

I mean this in the nicest way having been there:
Looking for blame, doesn't really help you. I went through everything I'd done and felt if only I'd done this or not done that, maybe it would have been different. In some ways I was lucky because I saw it on the scan so I went through that during pregnancy, and was more out the other side by the time she was born.

Yes, go for genetic testing, because that could effect subsequent babies. But start looking forward for your baby.
Is there a charity you can connect with other people who have children with similar conditions? Ask them all the questions, cry on their shoulders, rage against the universe with them. They've been there, done it with parents who have been before them.
You have a lovely baby, who will need more help than others. Don't let that take away from your time with them. At times it will be hard. There will be times when people comment, or say things that are, at best, tactless (I had someone say cheerfully when I announced my pregnancy #3 "as long as they have all their fingers and toes") and you'll want to shout at them, or crawl away and cry. But you will get through it, and you will be there for your baby when they need you. That is what's important.

Hi,

It's less to do with blame but more to understand how it happened, so it doesn't reoccur. This is why we want to do genetic testing.

Visual impairments can happen as a result of birth trauma. It's not widely reported on, but it can happen. Nystagmus is actually a neurological brain disorder, not an eye condition.

We never even considered birth trauma before his ophthalmologist said it could have been the birth. He even noted how he was born in his diagnosis letter. This did make sense to us, considering the difficulty with which he was born. However, I have still referred for genetic testing, just to be sure for the future.

I have a daughter who doesn't have the condition.