neonatal jaundice

[inwest]

My son, who is now 21 years has SEN. He has speech and language disorder which means that , although his hearing is normal his brain is unable to process language normally, He also has problems with hypersensitive smell and dyspraxia.
His jaundice was not accessed or treated after birth. Doctors say it is perfectly safe and normal for a baby to be jaundiced by I am convinced it is the bilirubin that destroyed the normal communication pathways in his brain. Is there anyone else out there that has similar experience?
Intellectually he is quite able, he can understand but not express himself

My twins had treatment for jaundice in scbu 13 years ago.
My son is OK, but his sister has speech and language disorder.
Both had the same treatment, so no idea.
It's must be so hard for you, thinking what if he had been treated for jaundice?
But for us it made no difference. Hope this helps.

Its not the treatment it's the bilirubin levels and the rate of rise, perhaps your daughter was exposed to higher bilirubin levels? This can be due to bruising for example , certain drugs reduce or prevent enterohepatic circulation (the removal of bilirubin from body) and also more acid in the blood increases circulating concentration of bilirubin by displacing it from albumin. It is highly unlikely that BOTH your twins had identical levels even though they received the same treatment

You can't really work out this sort of thing out from anecdotal accounts. Epedemiological studies would be most likely to give an idea but still not conclusive. A double-blind randomised controlled trial would be needed to properly show it. My DS has dyspraxia and speech and language problems but didn't have jaundice whereas both my DDs did (just below level required for treatment but kept in hospital) and are fine. This doesn't rule it out though. Have you found any academic papers supporting this idea? Is there a biological basis for this? I wonder about all sorts of things (mostly about pregnancy).

I also wonder whether my son losing 12% of his body weight and requiring phototherapy for his neonatal jaundice caused him some kind of brain damage that contributed to his ASD and verbal dyspraxia. I also wonder whether the alcohol I drank before I found out I was pregnant did something.
I guess we'll never know.

The scientific literature is full of associations between neonatal jaundice and LD including auditory neuropathy, bilirubin induced neurological deficit, central processing disorder etc, However this is not medical, and doctors do not accept a link, it doesnt mean there isnt one. Of course there are other reasons children have these disabilities. My son was very jaundice and received NO assessment or treatment. I am sure mild jaundice is no problem. To do a trial would be impossible and most babies are treated anyway.

ACTOGN
-- I doubt it was the alcohol unless you drank VERY heavily, jaundice makes babies sleepy and they dont feed so thats probably the answer to the weight loss. It may well have been the jaundice, did have bruising from delivery?

A trial might be possible for milder jaundice such as my dd had (we were kept in for 5 days but just not quite high enough to treat) but agree trials can only take place where there is uncertainty about the best course of action. That is why epidemiological studies can sometimes be helpful.

I personally think my Ds difficulties where present before birth. I put his weight loss (>10%) down to his difficulties in learning to coordinate his mouth to feed. You don't need to drink all that heavily to affect a baby in pregnancy but a few drinks in the first month probably wouldn't have an affect. Genetics are far more likely to be involved.

I agree that there is probably some predisposition due to genetics but if it is purely genetics that there would be in the family, there is dyslexia in my family but no one has the problems associated with language processing my son. I must stressed he was severely jaundiced without treatment.
We know that prolonged jaundice causes catastrophic disabilities (kernecterus) its hardly a stretch to believe that lower elevated levels of bilirubin can cause lesser brain damage, its not all or nothing

if there is dyslexia in your family, then there are, by definition, language processing problems in your family.

impossible to know, surely, whether high bilirubin levels caused your son's language problems, because these problems can occur as part of more pervasive disorder, including ASD, cerebral palsy, or on their own, without jaundice.

are you thinking about taking legal action? or are you just wondering about it?

There are many genetic disorders that are de novo, and where there is no familial link.

Dyspraxia, speech and language disorders and sensory issues can all occur for stand alone reasons.

Many babies do suffer jaundice with no need for treatment, the levels of bilirubin in these cases would not be high enough to cause long term damage.

Did your ds have other issues at birth - eg hypotonia, difficulty feeding etc? As these would have been present if the jaundice was severe enough to cause the sort of levels of bilirubin that would lead to long term damage. Do you know why he didn't receive treatment?

It is very frustrating when you feel there is a cause to your child's issues that has been missed.

He was very sleepy and didnt feed also he was VERY jaundiced and received No treatment or assessment.
The literature is full of papers that list jaundice as a cause of auditory neuropathy and central processing disorders, In our cae there were no levels but we do have photos and he was really dark orange.
As far as dyslexia is concerned, my sons problems with language are completely different to the difficulties dyxlexics in the family have, they are all clever successful articulate people with no hearing problems. I am just asking the question, perhaps there are thousands of people out there with LD due to jaundice and so called experts are telling us its safe, As i said perhaps the dylsexia is a pre disposition, As far as other problems are concerned, he doesnt have any,

The thing is, yes, there is a link between very severe jaundice and other conditions, whether it is the cause, or the jaundice is a symptom of those conditions is another thing. For example when ds was born, the paed's all said, that despite the fact that he was born at 39 weeks and was 9 lb 8 oz, he had all the signs of being premature. It was only, nearly a year later that it was thought that the reason for that was because he has a genetic condition, no confirmed diagnosis as yet, but it is thought that the condition caused the effects of prematurity. Whereas at first, when there were pits of things wrong, I convinced myself it must be something that happened in pregnancy or birth.

The link between severe jaundice and developmental problems is there, but as the jaundice is usually treated, it leads to no ill effects, unless the reason for the jaundice is the underlying condition, iykwim?

Was your son tube fed? Or have low tone/no suckle reflex? What were the effects of the jaundice? It seems clear, given your son's colour that he had jaundice severely, have you ever queried the hospital as to why his levels weren't taken or why his jaundice wasn't treated?

What is the difference between mild and very jaundiced? Ds1 who has no SEN was jaundiced, had no treatment, was difficult to feed because he was so sleepy and five days after birth when I was home the community midwife was shocked at his colour, but it was better than it had been.

Inwest, I'm shocked thwt your DS didn't get more examination/treatment, not surprised you have lingering concerns.

Thanks for the reassurance re drinking. I just got "moderately pissed" (ie from drinking maybe 3/4 bottle of wine) a couple of times, prob at 3-5 weeks pregnant. Obviously once I knew I was pregnant, I barely drank anything.

I've never fully understood why DS got so jaundiced by day 3. I don't think he had any bruising from delivery (it was a very fast labour though, unplanned home birth) but like bilberry I think my DS' inability to latch was due to his oral difficulties. I had verbal dyspraxia as a child so there is a genetic link.

I'm guessing that because he was barely getting any milk and lost all that weight he was more susceptible to jaundice? He ended up having 24 hours of phototherapy and having been admitted on day 3 we were discharged on day 6. My biggest regret is trying to persevere with breastfeeding at home and not going back to hospital earlier... I do still wonder whether the jaundice exacerbated what genetic stuff was there already if that makes sense?

My boys have mid line defects, including tounge tye. All kids effected had problems bf hence some could link that to jaundice. All boys have jaundice, very visable but below light levels. All was topped up with formula so that helped flush things through quicker I think.

In our case I'm sure it's genetics. I'm dyslexic, strong asd traits on my family side, dp has a genetic condition with zero symptoms. I presume for us, it's my traits and his genes mixed to give us sn kids.

We are in the ddd study but I don't ever expect a definitive answer.

For me, having a answer wouldn't help me. I'm a scientist so definatly interested in answers but I not seeking them.

In your case, if you feel it could have been prevented, I can see why you want answers.

Is there no study of long term effects if jaundice? British library studies?