longterm effects of jaundice and possible brain damage

[mayflowers9]

I was hoping to get info from someone with experience of severe neonatal jaundice. I have raised my concerns with my GP and we are on the waitlist to see a paediatrician, but that will take at least a few months and I am finding it difficult not to worry.

DS developed severe jaundice after a ventouse delivery, which was exacerbated by lack of milk intake, as my breastmilk hadn't come in and I (stupidly) didn't think I would need to pack formula in my hospital bag as I was planning to EBF. We were having difficulty with feeding and he was screaming and screaming all night with the most heartwrenching cry – I think this was night two after he was born. We did supplement with formula on his first night and I had some colostrum coming in, but by night two there was no formula left. A midwife was trying to help me and he did eventually fall asleep. In the morning, I raised an alarm as I wasn't able to rouse him and they took his bilirubin levels. He was just below the transfusion line and spent two days under the lights in our hospital room.

We were discharged and the hospital didn't raise any concerns. Now, at 2.5, DS has a speech delay and is on the waitlist for an ASD assessment. His private hearing test came back fine (with some mild glue ear in one ear) and we have a follow up in August, where I will ask about the possibility of hearing loss resulting from jaundice. I understand that ASD and kernicterus are two different diagnoses, but I feel very uneasy about that night in the hospital and wonder if DS could have sustained brain damage that wasn't immediately obvious. Is this possible with kernicterus, or would the effects be more apparent? Could a speech/intellectual delay come from kernicterus if we have no concerns about physical development or movement disorders?

Sorry that this message is so long! If you do have any input, thank you so much in advance.

I also didn’t know until DS was born. My mom told me that I was born by ventouse delivery and had jaundice too, I had no idea.

I looked after a baby with kernicterus once. There are about 6 cases a year in the UK (these were the studies I found at the time). This particular baby's bilirubin was about 2.5 times higher than any result I'd ever seen before- never seen anything like it before or since. My understanding is that UK guidance is quite conservative and that as a previous poster has said - being on or slightly above the transfusion line is still "too low" for brain damage to occur.

I'm sorry you're going through all this worry. Is there any way you could review your notes with a neonatalogist? Go via the hospital for a sort of "birth debrief"?

Look, you won't be able to say absolutely definitely that it didn't effect... but I think there's only a small chance it effected him at all. Lots of babies have jaundice. Lots of babies turn out to have glue ear and/or ASD who didn't have jaundice. If there is a correlation, I don't think it's a strong one.

Ds did not have jaundice and fed like a trooper.
He started glue ear at 10 weeks, had three lots of grommets over the years and was only discharged from ENT aged about 16. He was diagnosed with ASD and ADHD at 13yo.

Thanks for sharing. That's good to know about UK guidance being conservative. That poor baby, that sounds really awful.

I requested DS's medical record from his birth and our GP referred us to a developmental paediatrician, so hopefully we can review the notes together.

Thanks. I agree with this. If he does have ASD, which seems likely, I think it would probably be largely genetic, as DH has two autistic cousins. I have often wondered if my father and I are neurodivergent as well. I do want to have an in-depth hearing test, in case there is some hearing loss from the jaundice that we can help with.

I hope your son is doing well!

My daughter was born with pathological jaundice because of rhesus disease (blood type incompatibility) and was over the exchange transfusion line. She was in NICU for three weeks under blue lights, had immunoglobulin and ultimately 3 blood transfusions. But she was signed off at 6 months and is now 3.5 and I don’t think she has suffered any lasting effects. She had an extended hearing test which I think babies have if they’ve been in neonatal more than a week. So I wouldn’t have thought jaundice would have had long term effects on your son. But of course all babes / circumstances are different and worth having the hearing test. I hope you get the reassurance you need!

Thank you for sharing. That must have been so stressful, but I’m happy your daughter is doing well now!