Here’s the beginning of our story with Fiona:
“What a little peanut!” the midwife said as my baby dangled above my half-naked body. Peanut–it was the nicest thing anyone would say about the thing that fast became the focus of my baby: her size. Knee-deep in a birthing pool with my glasses off, I couldn’t see my child, nor as a first-time mom could I differentiate between small newborn and really freaking small newborn, of which my daughter was the latter. Then the nurses whisked her away, and there was silence, and when I asked if my baby was okay, repeatedly asked, please, is my baby okay?, the nurse with me wouldn’t answer.
But minutes later, our nameless kiddo was on my chest, nose smashed from the squeeze, looking wide-eyed and stunned by the world. All was well, and I was exhausted, and here she was, this person my body knew intimately for 40 weeks but a person I was nonetheless just meeting now.
But I could still feel it: the cloud of concern that hung over the room, the nurses’ worries, the why is she so small?, which spiked my stress hormones and is the reason I don’t have a good sense of what mothers mean when they talk about the post-birthing bliss if you go au-natural.
“She’s got good tone,” said the first pediatrician, holding her in his two hands, inspecting her back. “Her ears are typically set.” He kept looking at her. “The question is, why’s she so small?” I was sitting in bed, jamming a chicken salad sandwich into my mouth, reveling in the fact that, for the first time in 40 weeks, I was eating a meal without guarding my gag reflex. I was ravenous. It was the best chicken salad on the planet. I didn’t have the focus to think aloud with him.
Then he said, “maybe something genetic.” I tried to ignore this. It sounded surreal, foreign, untrue. Too rare. Not my story. Not our family’s story. Must be the medical community worrying for no reason. Still, we stayed the night just to be sure she was well.
The second pediatrician wanted to know about the placenta. Was anything awry about the placenta? Too small? Not equipped to feed wee Fiona, who now had a name? I had no idea. I told him I’d seen the placenta, and as it was the first placenta I’d seen in this world, I had no idea if it had been a good placenta or a bad one. It looked like a piece of rare meat.
If it’s not the placenta, he told me, then it’s the baby. “You see,” he said before offering a metaphor that every beginning doctor in med school should learn never, ever to use, “It’s either bad seed or bad soil.”
He meant, either I’d provided ninth months of bad nutrition for my baby, or my child began from a bad seed. Which made her a bad plant.
When he left, I cried. I tried to eat. The lactation consultant tried again to get Fiona to latch. I cried some more.
Then I decided he was just a jerk. This helped. And we took our release papers and fled the hospital.
We drove home slowly in the right lane at rush hour, surrounded by fast-whizzing trucks and SUV’s, and I sat in the back with my baby. The world seemed too hard and fast and sharp-edged for the softness of a newborn. I did not know then how lucky we were–that she’d had no complications, had spent no time in the NICU, was swallowing her milk, that she was well enough for all the doctors and nurses to send her home.
Three days after her birth, still stressed by her smallness and the uncertainty of it, we saw our family doctor. He said she was the most alert newborn he’d ever seen. “She’s perfect,” he said. “She’s the perfect size for her!” the nurse agreed. I sighed in relief. I now consider this visit a blessing: it offered us two months of ignorance, two months of normalcy, two months to see our daughter as a perfect being rather than a series of pathologies to address. Every parent deserves this. I thank God for a doctor’s cluelessness.
She wouldn’t latch. This became the focus of motherhood. Getting that tiny mouth around the boob. We tried, she refused, we drop-fed her, I pumped. But she ate. Two ounces at a time. And she never spit up. To burp her, I learned to bounce her vigorously. Other mothers warned me at first, then stared amazed at a just-fed baby, bouncing in my hands, keeping everyone’s clothes puke-free.
Two months old, she gave her first gummy, wide-mouthed smile. But beneath the fatigue of three and four feedings a night, I still had the nagging feeling. The echo of that first pediatrician’s concerns. “Maybe something genetic.” “Bad seed or bad soil.” Tests on the placenta had come out fine. “But the other doctor said she was perfect,” a well-meaning family member countered. Still, my husband and I made an appointment for another pediatrician and I sweated it for weeks. I think I knew something was coming, a shift in our parenting, in our lives.
Thus began the chain of appointments: the pediatrician found the heart murmur. We had an appointment for an Echo. The Echo found ASD and pulmonary valve stenosis. We got her blood drawn. I was convinced she had Turner’s. Then Noonan’s. Both genetic syndromes that made for small babies and heart anomalies. She gave us her first giggle in the meantime: On September 11. A child of irony.
When the doctor called with the results, we had a flight to catch in three hours. You know the story: short arm of chromosome four. We learned the name: something with a hyphen. Our mouths couldn’t get around that second word. Hirshel? Hersh what? Without having the time to dive into the internet, we left for a vacation with family, where aunts and uncles and cousins and great-grandparents met her for the first time, held her, adored her, loved her, and nobody said one thing about her seven-pound frame. She was almost four months old.
“So we have a special needs child,” I said to my husband, not really knowing what that meant, not knowing how limited, or unlimited, her life would be, but accepting it. My husband was steering the pram around the neighborhood. Fiona was sleeping. A strange calm descended. A calm I don’t always have, but a calm I go back to in the darkest times.
And then I tapped my fingers hesitantly on the keypad of my laptop and googled it, her syndrome. It was past ten-o-clock, and I should have been asleep, and all the windows were dark, and the internet dealt me its cold, clinically-termed blows. I read about the seizure disorders. The kidney and heart troubles. Read the words “moderate to severe cognitive disabilities.” Probably read another way to phrase that, but I refuse to type it here. And I read that “some kids even walk and say a few words.”
Even. As though a few words and some independent steps are victories. This was before I realized that yes, they are. This was before I could appreciate, could even peek an inch into the seriously heart-expanding life I was in for. Instead, I wept with a kind of panicked, this-can’t-be-real fear, the kind that happens only a few times in one’s life, that grips you by the throat, that makes it so you think maybe you can’t breathe. You probably know the kind of moments I’m talking about–the ground seems to break beneath you, and there is nothing to grasp onto, nothing to steady yourself in a life that is suddenly alien and upside down and what is this? This death of your old way of being? The windows were black, the ground broke, the internet glowed with its surreal bad news, and I was floating in the darkness.
And then I read that we–my husband and I–had a 33% chance of losing her in the first two years of her life.
I went to the kitchen and sobbed, and she was sleeping upstairs, and the sadness was no longer the selfish reaction that my baby wasn’t, would not be perfectly able-bodied, but that my baby could suffer, that I already loved her so much my heart broke at the thought of losing her in the next two years.
My husband hugged me and said, “If our time with her is limited, then I’m just going to make sure that I love her the best I can, every day.”
It was wise, a lesson I’d learned plenty before. Cherish what you have, when you have it. It did not erase the sorrow, but it offered me a way forward. I wiped my eyes and agreed. She would be our blessing, no matter how long we had her.
The geneticist was a delightful red-headed cherub. That’s what we called him. The red-headed cherub. He opened a binder, showed us a diagram of 26 chromosomes, all looking like overly-xeroxed copies of broken, black ramen noodles. He pointed to number four. He didn’t tell us anything new. But he told us in a way that made me feel like this life of Fiona’s was just fine as it was. “A deletion,” he called it. Not “a defect.” “A genetic anomaly” rather than an “abnormality.” “Possible intellectual disabilities,” he said. Not “mental retardation.” “She’ll probably always be small,” he said. “She probably won’t learn to crawl or walk when other kids do. But we won’t put limits on her.” And then he and his superior outlined more tests–kidneys, eyes. They’d start with a swallow study.
The geneticist explained that swallowing was a relatively complex thing. That the mouth has to push the food forward in one way and backward in another way, and meanwhile guard the airway, and this was a difficult cognitive skill. So the greatest risk to Fiona right now, he told us, was swallowing. Could she swallow? Or was she silently choking on her own spit? Many kids with WHS silently aspirate, he told us. This could cause her lungs irreparable harm.
I nodded through all of this, and thought what a feat it was to swallow, and admired all the people I saw walking on the street today who were chatting on the phone and looking at the clouds and worrying about their finances, all while swallowing, automatically, any fluid in their mouths. And rather than bemoan that my daughter might not be able to swallow, I reveled in the amazement that was swallowing, and humanity’s overwhelming adeptness at it! We were geniuses out there! All of us! Swallowing!
Afterward, my husband and I took Fiona into the family restroom for a diaper-changing, where a floor-length mirror was warped on the wall so bad it could compete with a funhouse. “Look at this,” he said, all giddy, and I walked over and stood on the adult-sized diaper changing table, and got my head level with his, and saw that his forehead was ginormous and his mouth microscopically small, and my forehead was microscopically small and my mouth ginormous, and we laughed and laughed at the body and the craziness of difference and the okayness of those differences.
I’d later learn that plenty of parents have not been blessed with such a positive genetics appointment. For a child with WHS, the prognosis was once “doom and gloom,” as some parents say. Your child will not walk, will not talk, will have no personality. Will be a vegetable. This was what parents were told, and the outdated research sometimes perpetuates, even today. I know parents of three and four year olds–kids who are now saying mama and running around at lightning speed–who were told the same. Your child will be a vegetable, they were told. And now they boast on blogs and on facebook and in person that their kids have defied the doctors.
But my heart breaks for the parents who have to process that kind of news. And it breaks for parents of children who are more limited–perhaps nonverbal, perhaps non-mobile–but are still far from “vegetables,” a term that is ableist and crude and should never be used to describe even the most disabled of people, because what knowledge do we have to say we know when the divine lightbulb in our beings shuts out? And now I’m ranting. And I’ll stop.
I’m grateful beyond words that our geneticist was realistic, nonjudgmental, and open to the many possibilities that Fiona could have in store for us. And that after he asked, “Is this your first?,” and after we told him yes, he offered a hearty Congratulations!
Everything a parent can take for granted got stripped away. This was not as painful as it sounds. We found ourselves rejoicing at the good news that the ENT doctors relayed: She could swallow her own spit! She could swallow breast milk, formula! She was protecting her airway! After a black spaghetti-like tube had been sent up her nostril and down her throat, and after doctors watched on video the two holes of her esophagus and her airway as she screamed through the feedings, the world seemed eternally optimistic! And it also felt surreal–we were elated over a bodily function most of us take for granted.
But this is our life now. This is our baseline. We rejoice over small things.
That day, we treated ourselves to Eggs Benedict at a fancy breakfast joint. And from then on, I repeat this to myself as a victory, as a reminder of all our blessings: she can swallow her own spit! Her kidneys are functioning well. She has heart anomalies, but they aren’t causing concerns right now. She can see well, she can hear well. She can swallow her own spit. Thank God. And now, our task is to help her develop as best she can. And love her.