Any parents here who had a baby with kernicterus?

[ymotanasyerg]

Have posted this elsewhere aswell but was hoping it would be seen better here! Hi I have a 3 year old boy (4 in July) who is under a lot of specialists- pediatricians/dietician/speech therapy the list goes on. He is awaiting an autism/adhd assessment, but the thing is he was born with quite severe jaundice (came on within 12 hours of being born) and no matter how much I pushed they didn’t actually test his bilburin levels until 5 days old- once he had stopped waking for bottles/ couldn’t wake him/ and anytime he was awake it was this heartbreaking high pitched squeal. When the bilburin blood results came back he was borderline needing a blood transfusion, but they opted for the less invasive phototherapy light instead, after 3 nights on it he improved. Now I only decided to look up online after-effects of jaundice as a newborn because whenever we saw a new/different pediatrician they always seemed quite intrigued in me explaining in detail about him having jaundice as a baby. Sorry trying to keep it short as possible while covering everything I can- so when googling the word ‘kernicterus’ came up so I done as much digging as possible (roughly over the last 5/6 months) and he seems to be ticking all the boxes to him maybe getting this and this is why he is the way he is now (and not actually autistic) bottom line is can I just bring this up in the next pediatrician appointment and ask if there’s a way to investigate? I must add I understand that children can end up severely disabled with this, so I am incredibly lucky in many ways. Thankyou if you’ve made it this far!

Hi Op,

Of course if you're worried about it you should bring it up at your next paediatrician appointment.

My daughter is 2 now and she also had jaundice, I noticed within 12 hours (my son had it also, and I did too when I was born)
I was dismissed, it will all be ok etc, she was checked a few times and I'd been in to A&E with her where the Dr told me that her bilirubin levels were below the graph and all was ok and it can take 2 weeks for her jaundice to get better.

So I had that in my mind, and I didn't want to keep annoying them if it was going to go away.
She was still drinking etc though. But 3 days later we had a Health Visitor come to see us on a Wednesday. She said to take my daughter in to the hospital on Friday if she was no better, so i told her that I wasn't going to wait until Friday and I took her in. When they checked her levels she was at the blood transfusion line also :(
But they did light therapy instead and she had 3 lights on her and within 6 hours her levels were right down which was a relief.

Anyway! She's also under a developmental paediatrician, speech and language therapist, and is a very small kid who doesn't say much but understands everything. She walked at 17 months and seems to be about 6 months behind her peers at all times.
She is also being assessed for Autism.

Now I've typed all that I'm actually not sure where I'm going with this! Other than it's all such a worry, and I hope you get the answers you need. I do wonder sometimes if it's connected to the jaundice at birth.

Thankyou for your reply. It is such a worry isn’t it especially when I feel I’m constantly comparing him to my other 4 children and he just stands out bless his little heart! I’ve always been an over worrier with my kids but I feel if I can get some answers to the way he is I’ll stop blaming myself for it. We haven’t had another letter through yet regarding his next appointment the last letter I got was regarding getting him an asd assessment in place, hopefully won’t be waiting too long🤞🏼Xxx

Difficult to answer whether there's a link in your individual case. On the one hand, visible jaundice at 12 hours of age (any visible jaundice in the first 24 hours of life) absolutely should have a level checked. Not doing so doesn't sound good. On the other hand, the exchange phototherapy line is set below the level where kernicterus should set in. The purpose of it is to avoid babies developing kernicterus.

So the question becomes whether your DS had higher levels than that at home, and they were already on the way down when he got to hospital, in which case kernicterus is possible, or whether they were still on the way up when he got to hospital, in which case it's very unlikely he had kernicterus. It would be more common, where jaundice started so early, and rose so high, for them to have still been on the rise. This would, for instance, be the case if he had a problem with haemolysis (breaking down red blood cells). This is something they would have tested for, so they could look back for it. Did they happen to check levels at home, to decide to admit him, then again at the hospital? Just wondering, as that's one way we see babies return with jaundice. And if so, there would be actual numbers showing whether the level was going up or down.

Hope that sort of makes sense, and helps with which questions you might want to ask.

Yes I did ask the midwife on the day we were being discharged if she could test him, to which she said because I’ve already had a baby (first born) with jaundice I know to keep him by the window and he will be fine. Another factor is that I’m O neg blood group and all my children (including ds this thread is about) are b positive like their dad, I’ve always had the injection at 28 weeks and after giving birth though. And I would of thought that’s how it works is they also the case for need blood transfusion? As he was just sitting below the line of needing one they actually got it all prepared Incase the light didn’t work but after 48 hours the levels started to drop. No they never checked his levels at home, just told me to carry on doing what I was doing putting him by the window and not leaving over 4 hours between feeds; he was okay apart from the obvious yellow until day 5, where he wouldn’t feed, wouldn’t wake for feeds so I rang the midwife who we were waiting for to do his 5 day check, she was brilliant though and made us her next call, called the hospital as soon as she got to ours and off we went xx

Sorry just read that back and made some awful spelling mistakes!!

I'd never heard of this but have been googling myself as your son sounds v similar to how mine was /is, and he had jaundice badly too as a newborn. He was treated with photo therapy for 4 days but it was inconsistent and I was accused by a nurse of abusing my baby by insisting his bloods were checked every three hours through the night as the dr had wanted.(New mum, first baby, scared, traumatic birth, ill myself, poorly baby...just what I needed. A complaint was put in and the matron (?) made sure I never saw that nurse again.) Anyway, ds is now 7 and has had every input under the sun. Like you, I'm seeing a lot of similarities and it could explain an awful lot.

@Lancrelady80 my neighbor also has a son very similar to my son who’s also under different specialist who are yet to find his cause- who too had severe jaundice- all very coincidental isn’t it. Sorry to hear your experience that sounds absolutely awful, middle finger to the nurse who said that! Xxx