I have debated whether I would write a post on this. It’s an intensely personal topic, and I’m sure I’ll offend someone. But screw it, I started this blog so I could be honest with those we love about what happened, and the telling of this story is not totally honest without addressing this.
Our saga with James in truth began in May 2013, not in December. Eleven weeks and 6 days into my pregnancy, ICU Dad and I went to the doctor for an NT scan. Given my blessedly uneventful pregnancy with our older son, we viewed this only as a great chance to take a peek at our newest addition. Suckers!
Then unnamed baby, now James, had a 4.9mm cystic hygroma. The genetic counselor broke it down for us: the cystic hygroma was not huge, but it still meant there was a 50% chance our baby had a chromosome problem, and even if chromosomes were okay, a 25% chance of a serious heart or kidney defect. If the baby had none of those, then we had a 96% chance of him being just fine. Previously unbeknownst to me, in an uneventful pregnancy your chance of an ordinary healthy baby is only 97-98%.
There were tears and terror. We asked for genetic testing, and the obstetrician who gave us the news rearranged his schedule to perform a CVS the same day. (That wonderful and kind doctor died suddenly of a heart attack about 3 weeks later – I only knew him for one day, but I still feel sad about that).
ICU Dad and I talked about it nonstop, and let’s be honest we seriously considered ending the pregnancy. But then we got the results back from our CVS: normal chromosomes, normal microarray. I requested a repeat NT scan, and miracle of miracles, at 13w6d the cystic hygroma had disappeared. Disappeared! Dr. Google (and I Googled that shit a LOT) overwhelmingly showed that early-resolving small cystic hygromas resulted in beautiful and healthy babies. Ten weeks later, we had two perfect echocardiograms under our belt — his heart was fine. The only thing found in all those scans was a single umbilical artery and a pelvic kidney that appeared functional, a very minor and common birth defect that could easily explain the cystic hygroma. All of our doctors agreed: we had dodged the bullet.
Except we didn’t, did we?
Back in March, James was about to head into surgery to receive a broviac, a permanent and painless IV access that would eliminate the need for all the needles my poor boy was enduring. In the pre-op preparation, I met for the first time a pediatric surgeon who is literally the most wonderful doctor I’ve come across in all of this. Also, he looks like a young Robert Redford, and he saves babies’ lives. I mean…hello McDreamy? Don’t worry, ICU Dad, you’re the only one for me. Also, I’d have to fight a line of nurses a mile long to get his attention — he’s pretty popular around those parts.
Sorry, I digress.
In the pre-op prep, Dr. Redford and I were talking about James’ crazy history all the way back to the beginning of the pregnancy. He sighed and said “I bet if you had known all of this would happen, you might have made a different decision last year.”
I was taken aback. I very nearly responded with a “Who in the hell do you think you are…?” Then I looked at his face, as he looked at James with such incredible kindness and sadness, and I understood immediately what he meant. Don’t you wish you could have saved this child from this horrific ordeal? Don’t you wish you could take all this suffering away?
As I waited for them to return from the surgery, I thought a lot about what the doc had said. If I was being brutally honest with myself, I realized that I had been thinking that: shoulda, woulda, coulda. Do I wish we had chosen differently?
I love my sweet J. Through my pregnancy, when he was born, and every minute after he has been mine, my own flesh and blood. I feel that connection in my bones the same way I feel it with Max. We could not have made any other choice with the information we had. Compared to the ordinary risk you take just by choosing to have a baby, 1 or 2 additional times in 100 would James have arrived with a genetic syndrome like Kabuki. One or two times. Some may be able to end an otherwise basically healthy pregnancy on those odds — zero judgment here — but we couldn’t.
Regardless, James’ experience shows that prenatal testing can only take you so far — those probabilities they give you are pretty meaningless, until you meet the one in the 1 in 32,000 (the odds of Kabuki Syndrome), or the 1 in 1,200,000 (the odds of HLH). (His name is James, pleasure to make your acquaintance). The chances of James catching RSV at 3 weeks old when he had never been anywhere other than NICU and our apartment (which was equipped two Type A parents and approximately 45 bottles of hand sanitizer), and then that RSV causing respiratory failure and turning into HLH, are astronomical. James is the first Kabuki Syndrome kid to have HLH in known medical history. There is no way, no matter what may have been found in our prenatal testing, that anyone could have foreseen this madness.
This is my conclusion: every time you have a child you take a massive, terrifying, you-better-hope-that-goddamn-parachute-opens leap of faith. Faith that your child will be healthy. That he will be able to appreciate the joy and beauty of life, as he also endures the inevitable lows. That if something bad happens to your child, whether it’s at birth, at 2 at 12 or at 35, you and that little one will have the strength to weather the storm.
I regret everything that has happened to my sweet baby J with a sadness so profound I can barely graze its edges without feeling it will suck me down and never let me go. But I will never regret the choice we made in bringing him into this world, and fighting for him with everything we have. Even after all of this, I still have faith he will know happiness after weathering these unfathomable lows.