A Tale of Two Brothers, Jaundice, and Autism

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I’ve been meaning to post on the topic of jaundice for a while, but I’ve finally been spurred to do this by a recent post at Left Brain / Right Brain. That post gave a nice summary of the current scientific wisdom about a link between jaundice and autism, concluding that at this point in time there’s no strong evidence for one. I had a very emotional time dealing with jaundice with my newborns, and as a desperate mother I even blamed it (and in-turn, myself) for my son’s autism – that was before I’d ever heard of research into such a link. So I think it’s topical that I share my story.

I had a difficult pregnancy and birth with my autistic son. (That story in itself is too long (and upsetting) to be thrown in with this jaundice story – I’ll deal with that separately in a future post). Those difficulties had left me feeling incompetent as a mother, even before I was one: I can’t even get pregnant and give birth without stuffing up, how can I possibly parent? Add to these irrational thoughts, the utter exhaustion and extreme blood loss, and it’s not too surprising that I reacted as I did when I received that phone-call after finally getting my new-born son back home.

My midwife called to say the blood test that had been taken before we’d left for home with our son, showed his jaundice was severe enough that he had to be put “under lights” back at the hospital. I just went into uncontrollable tears, and pleaded with her to tell me what I’d done wrong – why did my son have jaundice? She explained it wasn’t my “fault” but didn’t seem interested in dealing with my emotions, just in getting the baby back into hospital.

Jaundice is very common, especially in boys, and if one brother has it the next is likely too as well. As would be the case with us a few years later. (For those of you who aren’t familiar with the condition of neonatal jaundice, wikipedia can do the honours for me.)

So my baby and I went back to hospital, and they put him under lights, and it broke my already fragile heart. He was placed in the incubator, significantly sound-proofing him from the world. His eyes were covered, so he couldn’t look around either. I had to leave him in there as much as possible, so he wasn’t getting cuddles and touches, except for the breastfeeding. It was sensory deprivation on a range of levels, and it just felt and looked wrong. There are significant risks with jaundice though, so it had to be done. He also came out of that incubator for regular blood-tests to see if his jaundice was improving. Hardly a pleasant and loving start to his life.

A couple of days in there and his jaundice was improving. But I was going insane, and increasingly desperate to just be able to hold my son when I wanted, and take him home. They decided his jaundice was to the level that he could be taken out from under lights, but it was made clear to me that this decision was more to do with the fact that there was a shortage of phototherapy incubators and another child’s jaundice was worse than my son’s currently was. So we were told we still couldn’t leave the hospital, I had to keep his cot by the window to get what little sun he could that way (sun exposure being the regular way to combat less-severe jaundice). They told me to wait on one last blood test, and that would probably show he was OK to leave by the end of the day. They’d get back to me within two hours.

Five hours passed. I made enquiries, what was going on? Where were the results? They told me to be patient. About another two hours passed, I got stroppy. I wanted to know what the hell was going on. They admitted that they had lost the blood, and were trying to find it / the results. I had had enough – my son wasn’t even under lights, what was the benefit of being there. With the support of my husband, I took my baby and left the ward, saying I’d come straight back in to hospital when they found the results, and if they showed my son required more lights. They finally took us seriously and gave up on the missing blood test, and gave us an immediate blood test and result (it only took a few minutes); our son was OK to go home. That was largely the end of the jaundice issue – there were just more blood-tests and home-based measures.

Years later I would wonder what impact that early sensory deprivation had had on my child. Rationally, I knew the answer was likely to be “none”. Emotionally, I was still raw from the whole experience.

When I was pregnant with number two, I asked the midwife if there were any known factors for pregnancy and birth, that increased the likelihood of autism. She mentioned that jaundice came up in the literature. My heart just sank. Great. She gave me all the medical journal articles to read for myself, and I reached the same conclusion she had – it was an unlikely link. It was also unclear from the research whether it was the jaundice or the treatment of the jaundice that was the problem (though it was more likely to be the former if it was either).

My second son was born (after a normal pregnancy and birth), and he got jaundice. Because of the emotional toll of putting a baby under lights in a hospital – instead of having him at home with me – I fought to do anything and everything to not have him go under lights. I also couldn’t simply forget what I’d read about jaundice and autism. I breast-fed him like crazy, and I exposed him to sunlight whenever possible. His bloods showed he was at the point where it would be best for him to go to hospital, but I wanted a second opinion this time. I was told I could keep him at home, on the condition he got a blood test every morning to monitor him for now. The bilirubin level peaked then slowly, steadily, fell. The jaundice had been bad but we’d managed to keep him out of hospital.

As it turns out, my eldest has autism, my youngest doesn’t. But I don’t make that tempting and popular error of thinking my anecdotes prove anything. They are just part of the story of my sons’ lives. I got over blaming myself for the jaundice, and I got over blaming myself for my son’s autism too. These things take time. Getting over those feelings and thoughts also required information about both autism and jaundice. Maybe a strong link will be shown in the future, and then maybe they will figure out how to address the link, if it can be addressed at all. All of that appears unlikely for now though.

I would be very interested to hear your own jaundice / autism stories too. Sharing made me feel better, maybe it can do the same for you.

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