My son is now 10 weeks old. He has a congenital heart defect and severe birth defects, limb differences with all four limbs affected.
I’m here now because I have a story to tell, a story with infinite ellipses and a looming question mark. It’s just the beginning of a story, really.
But does the story about my new son start the day he was born? Or the week before when we learned he had profound defects and would likely not survive? Or the start of my pregnancy when I learned he was one of three, two of whom did not remain viable?
I think to get the most understanding of who this boy is, what he means to us, I have to back up even more.
My older children are almost thirteen and nearly six. I joke about the seven year age gap being one of the “best kept secrets” of family planning, but there really wasn’t any planning involved. The big space, while wonderfully beneficial and I wouldn’t change it now for anything, wasn’t the result of careful decision making, but rather inexplicable secondary infertility. I always imagined myself as the wisecracking mom to a passel of feisty kids. I wanted the rowdy chaos of a big family. But my quirky biology didn’t comply.
I lost a pregnancy early in the second trimester, about four and a half years ago. I’ve had a number of very early miscarriages, which were disappointing, but nothing like the devastation of losing one after crossing into the proverbial “safe zone.” That loss resulted in lingering complications. It was a difficult time to live in my own body.
So when I found myself surprisingly expecting back in the early spring of this year, it was hard to believe. It was hard to tell myself that it was true, let alone to tell anyone else. It was too fantastic.
I felt like maybe I could protect the idea of it and make it stay real somehow by not breathing it aloud to others. And then I started bleeding. And I bled constantly for over a month, during which I learned I was losing two tiny embryos. How ironic that years of wonky fertility would find me knocked up spontaneously with three, each in a separate sac? But the irony turned around on itself, like a mobius strip, and it was a pregnancy loss after all.
There were weeks of not knowing if it would be a total loss or not.
When the bleeding stopped, there was one scrappy baby, holding on in there.
And suddenly, I was the caretaker of this tremendous and wonderful news. It was too unreal and too thrilling to me to want to share the news.
How could I tell anyone that I was pregnant and have them possibly understand what that could mean to me? Of course, such knowledge comes up organically, in conversations and double-takes (is she or isn’t she?), and it didn’t stay my sweet secret for long. But, even once the word started getting out, I didn’t make a deal of it.
I didn’t tell Facebook (also, fuck Facebook. while we’re at it.) and I didn’t make any grand announcements.
You’d think if I was so happy about it, I’d want to sing a song from the roof and do a mass postcard mailing, but it was just too precious to expect anyone else to appreciate, and I felt very protective.
Once the high drama of the first trimester passed, it was a long dull slog through ill-fitting pants and raspberry leaf tea and heartburn.
I had delightfully warm and chatty visits with my homebirth midwife; we organized the house and checked off an industrious home improvement To Do list; there was only completely glad anticipation.
I had what I hoped would be my last prenatal appointment on November 2nd, which was also my “due date”. My midwife didn’t feel certain about the baby’s position and had me zip down to an imaging clinic for a quick ultrasound. I had a lot of anxiety on the drive. I was down to the wire, for sure, and didn’t have any time to flip a breech baby.
The ultrasound tech saw right away that baby was head up. I sighed and tried to remain cool.
I’ve got this, I thought. Maybe the baby won’t have the exact birth we’d been planning, but it’ll be okay.
And then the tech asked me to wait in the room. I was confused by this, and called my husband. “Baby’s breech” I told him when he answered, “but it’s a baby in there, not, like a cat or something. I saw the head and I think the hands.” And then he asked me, “the right number of fingers?” And then I had to hang up quickly, the tech was coming back with someone else.
I was introduced, in that small dark ultrasound room, to an older man, the radiologist. He shook my hand and then blurted out, “Your baby has multiple abnormalities.”
He said the baby had deformed limbs, missing fingers, probably missing other parts. I could barely hear him from this whooshing sound suddenly throbbing in my head. I stood up and grabbed my bag. “I don’t know the words to say,” I remember saying. And that’s all I said. I walked out of the room, walked past the waiting area and said to my big girl, contentedly reading a book by a window, “We’re leaving now,” as I walked out the door.
I know by the time I got into the car I was crying. I know that I tried explaining to my daughter why I was crying, except I didn’t know. I know that I called my husband and somehow told him.
I know that my midwife called me and told me not to drive myself home. I know that I told her I’d be fine. I’m fine. It’s fine. Fine.
I know that I kept telling myself I can’t crash the car because I have to take care of my daughter.
I know that by the time I got home, about forty-five minutes away, my husband was also there.
I know that we left almost immediately to the city, where somehow I’d been fast-tracked into an appointment at a maternal fetal medicine clinic for a level II ultrasound and an amniocentesis to see what congenital birth defects that he had.
I know that I cried all the way there.
What happened next is we learned this baby we’d been expecting all along had “significant” and “profound” birth defects, in and out. We learned he was a boy.
We learned that he had syndromes that were considered “incompatible with life.”
Two days after that appointment, we had a consultation with a neonatologist and a meeting with the hospital ethics committee. Maybe you already knew that hospitals have ethics committees, but I did not. By this time, our baby’s file had been shared with a multitude of specialists who carefully analyzed his congenital birth defects.
The neonatologist told us that she did not think it would be unreasonable for us to proceed with an out-of-hospital birth. By which she meant, there is not a lot they can do for this baby, so maybe you just want to spend his last moments peacefully at home.
We were braced for the worst. The best was still very bad. Based on his rare and complex congenital birth defects, all best guesses determined that the likelihood of him having severe neurological impairment was very, very high.
Would he be able to eat?
The ethics committee gave us their veritable stamp of approval, entrusting us wholly with all decisions. We discussed how long we would continue support for our child? What kind of support? I learned the phrase “palliative care”.
There was one week in between my world falling apart and his birth. One week of such deep despair I won’t even begin to describe it. One week of waiting for him to be born so he could die and we could say goodbye.
One week of listening to Pearl Jam’s Just Breathe over and over and over again, like some kind of prayer.
Among our ethics committee approved plan was my insistence on avoiding a C-Section. I don’t suppose that the hospital sees a lot of vaginal breech births. Probably fewer Pitocin-induced vaginal breech births. I also was firm about refusing fetal monitoring. Did I want to hear the heartbeat of a baby who would not live?
And while my other babies were born triumphantly without pain relief of any kind, I assumed I would need something to get me through this dreadful thing I had to do. In the end, though, the drug made labor so hard and fast and intense, I was out of my mind with the hurt of it all and did not have time nor wits to request pain medication.
I say that not out of pride, for there is nothing to be proud about what was the darkest moment of my life, but just to illustrate what an unusual birth it was.
Everything about this boy has been unusual.
There was no tender welcoming a new life into the world. He was zipped across the hall, neonatologist and NICU nurses and cardiologist and geneticist and who the hell else at the ready, to check out his birth defects. I turned my head away and didn’t even want to see him go.
We heard him cry. It was a confusing sound. We thought he would need intubation. It was assumed that his heart defect would prohibit his lungs from working efficiently.
But he was crying.
And they brought him back to me. And they said he was healthy.
And I held his tiny broken body and I nursed him and he latched on better than my other babies latched on as newborns.
And I cried.
I cried because he wasn’t dead and I cried because he was alive. No one mentioned the possibility of leaving the hospital with a disabled baby. How do you even prepare for such a thing? There is no preparation. There is only disbelief.
His stay in the NICU was brief, just over a day, for monitoring. This little champ maintained a near perfect blood oxygen level, despite his heart defect. He’ll need surgery sooner than later to repair his broken heart. The pediatric cardiologist explained it as a common congenital defect, a routine surgery. But in my world, there is nothing common or routine about open heart surgery for a brand new baby.
Prior to this roller coaster, the most serious medical situation my family experienced was that time my daughter had stitches by her eye eleven years ago. How’s that for contrast?
How do I tell you about this baby?
I do not want the sum of him represented by what he is not, what he is missing, the challenges that await us.
But what else is there yet?
His issues are not minor. His bilateral leg condition alone occurs approximately once in every one million live births. He will never walk without serious, invasive surgeries and devices. Amputations. Prostheses.
Do you know what a mindfuck it is to hear such words about a newborn?
Can you feel the weight of this?
My big boy, the bouncy one, the easy-going one, the boy with the casual shrug of his shoulders, mentions his baby brother’s hands like it’s the most obvious, simple thing ever. “He only has three fingers on one hand,” he says, “and two fingers on the other one.” So matter of fact. No catch in his throat. No mourning the loss of future handprint turkeys or making the motions to so many kid songs.
I’m not there yet.
I’ve been looking at and loving on those tiny malformed hands for fourteen days now and it’s still hard for me, even as they tell me “it’s just mechanics” and “he’ll figure it out” and other encouraging platitudes.
I am usually so guarded and private. It’s out of character for me to share so much here, even as I’ve intentionally omitted specific diagnoses (a grouping of several, with no umbrella catch-all for them all together as of this point). But everything is different now. Since we’ve been home from the hospital, I’ve been hiding. A few people have met this surprising baby, but we haven’t yet left the house, save for doctor appointments.
I can’t hide indefinitely. I will have to be brave and bold enough to withstand whatever questions and curiousness occurs when the world meets Ulysses.
He looks an awful lot like his big sister did as a newborn. Same deep eyes, same frowny mouth. When he’s all wrapped up in a blanket, you would never know that he has such serious things going on. And I can assure you that he does not know. Everything else about him is just what you’d expect from any newly born babe. He squirms and fusses.
He makes those mysterious sleep smiles. He flails his arms when a loud sound startles him. His brain seems normal. Everything else about him seems normal.
There is nothing normal about our life now.
We have so many appointments scheduled. He has already had more doctors examine him than maybe my other two children, myself and my husband have ever had, all together. I don’t know how to get used to living such a highly medically managed lifestyle.
It’s been just three weeks since everything changed. So much information to process in such a short amount of time. I’ve blamed myself incessantly, even as I know there was nothing I did or did not do to cause this. That is the absolute truth, and yet, I worry that people will wonder… of course they will. People with murky knowledge of genetics, people who have grown lazy in their own good fortune, people who can’t possibly know how wanted and treasured this little baby has been all along.
Everyone’s delighted that he survived the birth, that he is thriving.
And yes! What a great outcome!
But now what?
Since I wrote that, we have laid out a plan for open heart surgery (soon) and orthopedic surgery (before his first birthday). He is growing plump and smiley.