Congenital hypothyroidism: the past

Although I’ve mentioned it before, I’ve never explicitly written here about my experience with the Boychick’s congenital hypothyroidism, and how it affected me as a parent. This post will be published in two parts: The Past, and The Future, because when I finally sat down to write about it, more than 2000 words came out — apparently I’d needed to. Both parts are written; the second will be published tomorrow.

The Boychick has congenital hypothyroidism.

When he was a week old, we got a call that his metabolic screening panel came back positive for congenital hypothyroid. I think this call, this first pronouncement, was from our midwife, but I don’t remember her calming tones, her everything-will-work out demeanor: I remember the blood in my ears, the grip around my perfect child tightening, the irregular shape of the bricks outlining our empty fireplace. There were more phone calls after that, to or from the endocrinologist, to a rapid succession of health care practitioners as we scrambled to answer the question “Who is the child’s pediatrician? We need to know who to send the results to.” Pediatrician? We don’t have a pediatrician! We weren’t supposed to need a pediatrician — the midwife follows him up for the first two months, he isn’t going to get vaccinations right away, and well-baby visits are pointless! And besides — ever mindful of the lessons learned at my MD mother’s knee — family doctors are for babies! We just haven’t found one yet! But apparently, we had to, and soon.

We got the call on, perhaps, Friday? He was born on Thursday the week previous. One week we’d had with perfection — the most perfect baby ever born, perfect smooshed nose, perfect hematoma on his perfect skull, perfect grey-blue eyes, perfect long toes with perfect tiny nails, perfect red “angry baby!” Hulk impression, perfect everything — and now we were told it was a lie, that he was broken, defective, lacking, and so were we, since we didn’t even have a pediatrician for him. He had never been dressed, never worn more than a prefold diaper Snappi’d or wrapped around him, coverless to learn his elimination patterns. He was our Naked Baby, our perfection incarnate. And I had failed him.

We were told, at first, he’d need a follow up blood test on Monday, and a pediatrician today. Within hours we were told no, he needed the test now, today, and a script for thyroid to start today just in case it wasn’t — as the odds were in favor of — a false positive. A week of extra thyroid for the false positives, the endocrinologically typical infants, was worth the week of not-delayed brain development for the true hypothyroid babies.

I don’t remember who called the orders, who chose the lab, who told us when to show up. I remember getting him dressed that first time, remember the green onesie with the yellow duck patch sewed on, remember it hanging unsnapped over the brown wool shorts I’d knitted for this perfect baby, the red Kissaluvs diaper underneath. I remember it was the first and only time we used the diaper pad we’d went out and bought a dresser for (instead of the usual other way around — we’ve never done things normally in this family). I remember the drive to the hospital, the crisp clarity, the unreality, of the world outside; remember marveling at the green on the trees, as Oregon had slipped from winter to spring while I hibernated, naked and content in the dark, basking in the light of our own explosion of life. I remember the sway of the car as I sat in the back, on the side that had no buckle in the car we couldn’t afford to replace or repair, heedless of my own safety, heedless even of the physics of my baby’s safety in the rarity of an accident, because it would have taken much stronger forces than gravity and inertia and momentum and seatbelt laws to pry me from his side. I remember leaning over his car seat, staring at his perfect face, still so slightly bruised from the birth, telling him everything would be fine, telling his father to drive slow because everything felt so fast, caressing his perfect hand with their extraordinarily tiny-huge fingers. There had never been so much, so many barriers, between us.

There was a blood draw, which he slept through, lying on a table with me sitting at his head, The Man at his feet — in socks? those tiny leather soft shoes, the first baby purchase we had allowed ourselves to make? — his fragile-seeming infant arm in the phlebotomist’s hand, his blood running in a tube from the still-vernixy crook of his elbow to the vacuum phial in her other hand.

We went home, and I ripped both our clothes off and dove into what had become our chair. I couldn’t eject the reality of his positive test from our lives, but I could and would and emphatically, immediately did shed from us the barriers between us it had required. Naked again, right again, I held him and nursed him and cried into his sweet-savory-sparse hair.

The follow up results came back, and they were very, very positive, and we were very, very grateful — though not exactly pleased, for all the stress it had brought into our lives — we had chosen early metabolic screening, had agreed to prick our newborn’s heel not once, at a week, but twice, the first at three days, giving us the results within the seven days required for supplementation to start, for future brain damage or deviation to be undetectable.

Eventually — probably within the week, but I could no longer say — we met the pediatric endocrinologist, a woman I, nearly four years later, still adore, who explained she would be happy to either consult if we selected a primary care physician for him, or would take full responsibility for this part of his care, would order the tests and prescribe his medication, would chart his growth and answer our questions, would manage his dose and his condition with the full power of her experience and expertise, and it would be up to us and the luck of childhood illnesses whether he ever saw another care provider at all.

I wanted to slap the first responder, who had demanded the identity of “his pediatrician”.

Our days came quickly to revolve around his little daily pill. Torturously, the initial dose — higher to make up for the week without any thyroid at all, as his ability to leach umbilically from my supplies dried up with his cord — was white. White, the color of milk. White, the color of his copious, many-times-an-hour spit up. We would have a spitter, of course, because that’s exactly what every needs-daily-medication baby should be.

If he spit up the pill, we had to repeat it. If he spit up, but there was no pill, there was no need. So we would call our endocrinologist and ask, does he need another dose? And she would say, can you see any pill? And we would answer, the pill is white! And she would say, oh, that is tricky. Well, if he doesn’t spit up for the first fifteen minutes, it should be fine. And we planned our days around this dose, his spit up, the availability of The Man to be there, for he, always, would give the pill — I would express into a shot glass (one month old, and our child had his own collection of shot glasses), and The Man would crush it, and scoop up my milk, and tap the powder — careful not to lose any to stray baby kicks or an errant sigh — into the milk, and maneuver it, so carefully, into his mouth.

(There were other methods we tried, at first, other recommendations — medicine spoons, and syringes, and pre-mixing — and eventually we figured out the pill would dissolve entirely on its own, uncrushed, but that was the way we did it in that unending forever of the first few months of parenthood.)

And repeat, as needed, until it was all gone, the rejected drops retrieved and respooned more carefully into his mouth than any parent had chased strained carrot mash — we, who planned to only allow our baby to feed himself, had a collection of plastic-covered baby utensils to rival the most avid spoonfeeder. We suffered the surprised remarks from the checkout woman querying “Isn’t he a little young for solids yet?” as we bought yet another package, having lost so many to unwashed dishes and spoon-obsessed dogs. I grimaced, said nothing, and didn’t give in the urge to strangle her.

We would time this exercise to coincide with a wake up, after a feed and a nap, but before a feed and play time and never-ending-spit-up-time. If we were lucky, we’d get him awake and pilled and give him a few minutes of digesting before he wanted my breast and to refill that I-swear-it-was-bigger-on-the-inside stomach with the ammo for a new round of “was that a piece of pill?” and “pass the prefold, I think it got in my hair this time!”

We were often not so lucky.

Part two will address how this experience is affecting this pregnancy — and my worries about the future.