Brandon’s brain and how it could have been saved (14/14/12)

I first met Brandon 2 weeks ago.  Already a month old, he seemed to be doing OK at birth – except he was getting more and more yellow.  When he stopped feeding well, mum brought him to Kijabe Hospital.

I don’t know if you’ve ever seen pictures of tetanus before – a severely arched back from severe muscle spasms and a malevolent grin known as “risus sardonicus”.  This is how Brandon looked – but he didn’t have tetanus.  He had the most severe form of jaundice, called “kernicterus”.  Where excess bilirubin gets into the brain and starts to cause damage.

Kernicterus is something we learn about during pediatric training – the to be avoided at all costs diagnosis because it causes long term damage.  The only treatment for it is to, one syringe at a time, take out the baby’s entire blood volume and replace it.  Twice.

For an adult that would equate to about 10 litres of blood – for Brandon it meant 600mL.  This exchange transfusion is something I’d never done before working in Kijabe, but have needed to do on 4 different babies since I’ve been here.   So we started exchanging Brandon.  Even though the blood test told us that his bilirubin level was only 21 (378 for you Australians), we didn’t believe it – this child’s brain was under attack.

The intern did the exchange on Brandon that night – 3 painstaking hours of pulling and pushing, discarding and replacing.    After she was done, we rechecked the bilirubin level – 44 (792).  Higher.  And he was still arching his back, showing us that his brain was still suffering.

So the next day, I exchanged him again.   10mL out, 10mL in.  Repeat.  10mL out, 10mL in.  Repeat.  Sit under the nursery heaters, sweating in a sterile gown, hat, gloves, mask, so the baby doesn’t get cold.  10mL out, 10mL in.  The IV line isn’t working so well.  5mL out, 5 mL in.  Every minute, a nurse documenting how the baby is doing, making sure his equilibrium is surviving the rapidly cycling tidal pull on his circulation.

A few hours later, we rechecked his bilrubin.  41 (738), with some new signs that maybe his liver was starting to malfunction.  Arching his back, drooling.

Bradon had an exchange transfusion 4 times.  His diagnosis at this stage was still unclear to us – most babies with kernicterus have severe jaundice because their red blood cells are being destroyed for one of many reasons, but his were not.  Or because their livers haven’t formed properly and the bile can’t drain, but his was fine.  Or because they have a life-threatening infection, but he didn’t.

So we sent tests for hepatitis, and gave him medications to try and help his liver get rid of the extra bile that was building up.  And slowly, after exchange number 4, his liver has started to recover.

The problem is, his brain hasn’t.  Although he is able to breast feed, he just isn’t acting like a normal baby.  His tone is all wrong, he arches his back erratically.  His brain will never work properly again.

And my heart breaks that we couldn’t save him.

Today we got our final blood test results – he has congenital rubella.  An innocuous little infection that in adults causes a mild rash, some swollen glands – maybe some aching joints.  And when his pregnant mother had these symptoms, there is nothing she could have done – and she recovered just fine.  Brandon, however, will have a devastated brain and even if he regains any function, there is still a good chance he will have heart problems, hearing defects or blindness.

But if his mother had been immunised, Brandon would be smiling today, following her with those precious eyes, grasping her hair as he nuzzles at her breast.

Please immunise your children.  Don’t fool yourself into thinking that rubella can’t hurt you because you live in an industrialised country – while “herd immunity” used to protect everyone, cases of congenital rubella are diagnosed every year in Australia and the US.  It’s an infection that can strike any unimmunised woman, blissfully unaware of the risks her parents chose for her, from exposures both within the country and from without.

If you refuse to immunise your sons, please at least immunise your daughters.  Because Brandon could be your grandson.

- M.

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If you’ve never immunised your kids, it’s not too late.  There are great catch-up schedules available, and you won’t receive the third-degree.  We just want to see healthy babies.