April is National Donate Life Month and Bunny, Pip, and I want you to be very aware because without organ donation and transplant, Pip wouldn’t be with us today.
More than 115,000 men, women, and children need life-saving organ transplants right now and every 10 minutes, another name is added to the list. An average of 18 people die each day waiting for organs.
This month, I’m gonna tell Pip’s story – a little bit every day. We need to improve these statistics. Learning more and talking more and sharing more is the first step.
Bless His Pointy Little Head
My grandmother used to say, “Well, bless your pointy little head!” if we did something especially sweet. We had normal heads, though. Just so you know. It was a term of endearment.
Pip’s pointy little head was a different story.
So every other week we would make the half hour drive to the pediatrician so that she could be my second set of eyes and she would weigh him and measure him – his length and his head.
Except the second time we did that, she measured his head…and then she re-measured his head…and then she measured his head again…and then she pulled out his growth chart…and then she measured his head again. And then she said,
“His head isn’t growing.”
Infant heads grow really rapidly…because infant brains grow really rapidly. There is a steep rise on the infant growth chart – especially for the first year. See here?
Pip was born with a head in the 10th percentile, it fell to the 5th in his first visit after the Kasai but the doctor didn’t think much of it. It was now below the 1st percentile. It was too small to be plotted on the growth chart.
I’m no doctor, but it seems like a bad thing when one’s brain stops growing.
His pediatrician concurred.
Pip’s pediatrician called the liver specialists to ask if this could be related to the Biliary Atresia.
They said that there was no way at all that Pip’s lack of head growth had anything whatsoever to do with BA. Nothing. It was impossible. They suggested that perhaps he had an unrelated defect that was causing him to be microcephalic.
A smattering of science from the Wikipedia
Microcephaly is usually defined as a head circumference (HC) more than 2 standard deviations below the mean for age and gender. Microcephaly may be congenital or it may develop in the first few years of life. The disorder may stem from a wide variety of conditions that cause abnormal growth of the brain, or from syndromes associated with chromosomal abnormalities.
In general, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor.
Exactly what every mother wants to read. Exactly.
They suggested a full genetic microarray, torch titers to see if he had been exposed to viruses that cause brain damage, organic and amino acids, etc. etc.
So then we waited for his liver to function properly AND waited for his head to grow and we had nine vials of blood drawn for those various tests and then we waited for the results of all of those tests to trickle in. I checked his poop and measured his head and checked his poop and measured his head. And I waited for his liver to function properly and waited for his head to grow and I waited for the panic to go away and for my jaw to unclench and to stop feeling so sick to my stomach.
Four or five nights out of the week, I would sit up in bed with my computer on my lap searching either for reasons for microcephaly or a connection between the malnutrition caused by BA and delayed head growth. Those sessions often ended with me crying myself to sleep.
Pip, on the other hand, in spite of everything, was a pretty happy guy. He was patient and could sit on my lap for hours just looking about while we waited in waiting rooms and consulted with doctors and searched for clues on the internet. He would cry during blood draws but would immediately smile his big grin at the phlebotomist once it was over. In fact, all the phlebotomists knew him by name and they would all come out and see him and hold him when we walked into the outpatient lab. He would flirt with the nurses – smiling at them until they looked at him and then hiding his face against my shoulder when they did. Flirty peek-a-boo.
The results of all the tests came back and everything was normal. We had no explanation for his lack of head growth. But his head continued to not grow. For three months. I mean, look at that chart. A baby born with a head that’s in the 10th percentile should have about 4cm of headgrowth in 3 months. Babies grow quickly. The rest of Pip kept growing – just not his head – at all.
His pediatrician made me my own chart that plotted his growth to that point and I carried it around with me and measured and plotted and showed it to liver specialists…and a neurosurgeon….and a genetics specialist…and the people at Cranial Technologies…and back to the liver specialists.
Nobody had any answers for us.
The liver people said I should stop obsessing – head growth isn’t that big of a deal.
The pediatrician said that of course it was a big deal – it was his BRAIN and it wasn’t GROWING.
We kept asking if the malnutrition from the BA could be keeping his head from growing. After all, the brain is mostly fat and Pip couldn’t process fat. And vitamin E is necessary for brain growth and Pip couldn’t process vitamin E.
They said it wasn’t possible. They said that his brain would be affected last – after his body showed dramatic signs of malnutrition. But Pip was growing fine so that couldn’t possibly be it. He didn’t look malnourished. I mean, he was neon green in color with a normal-sized body, a bloated stomach, and a tiny head that was still pointy because it has to grow in order to round-out after the trip down the ol’ birth canal…but he didn’t show any classic signs of malnutrition.
It was a constant back and forth that lasted for weekss. It was exhausting and frustrating. And in the darkest moments, I couldn’t help but wonder…if his life is going to be cut short anyway…and his brain is going to be severely damaged…why would we put him through a painful transplant?
Except there’s no way to know if the microcephaly is caused by the malnutrition without getting the transplant and waiting for his head to grow.
I was ready to call the Kasai a failure. There was clearly no bile flow and there was a place deep inside me that felt pretty sure a transplant would get his brain back on track – regardless of what those experts said. And, if I was right, what if the lack of growth was causing permanent damage while we waited?
The liver team wasn’t willing to call it a failure until it had been three months.
So we watched and we waited.
On the plus side, we never had to buy him any new hats.
Tomorrow: Pip’s first Halloween
To learn more about organ donation and to make sure you’re on the registry for your state, visit www.donatelife.net
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