Memoir

I Was 20 Weeks Pregnant When They Told Me My Baby Might Never Be Able to Walk

Diagnosed with type 1 diabetes as a child, I was told I should never have kids. When I finally did conceive, I ended up having to make the hardest decision of my life.

I Was 20 Weeks Pregnant When They Told Me My Baby Might Never Be Able to Walk

Now.

My first instinct is to hop a plane to the pink palaces of Jaipur or the white-walled city of Dubrovnik. I put both trips on hold seventeen weeks ago when the stick came back with the smallest, fullest plus sign I’ve seen. Every muscle in my body readies itself; they want to run. Not to escape the reality of it all, but to deal with it my way, my restless feet itching for the next place I’ve never seen. Of course, running isn’t an option. My second instinct is to wallow, to bury my heart in a hole so deep the heavy, cool dirt will stop it from hurting.

There are no holes here. Here, in this wing, there are white walls, white tile floors, and white coats awash in gray light because no one has switched the fluorescents on or the monitor off. He’s still there on the screen, the butterflied end of his spine magnified on the ultrasound of my uterus. The doctor says his vertebrae is crooked and not fully fused on the final third of his spine. There aren’t enough tissues.

Before.

The white-haired doctor sits on the edge of my hospital bed and talks to my parents about my diagnosis. I am ten and I do not exist until I tell him one of my favorite characters from The Baby-Sitters Club, Stacey, has type 1 diabetes too. He tells me this is real life and therefore much different, like somehow I don’t know that. My parents frown, but neither of them cry. They save that for later, for after he tells them about my shorter life expectancy and how I should never have kids. They save their tears for when they think their diseased child is asleep.

My dad squeezes what fat he can get on the back of my arm and jabs the needle into my flesh. It stings, but not as badly as the stench of alcohol wipes burning my nostrils. He and the nurse worry about the pain so I reassure them: the only thing that hurts is being forced to drink two liters of Diet 7Up for its hydration and its nausea-reducing qualities.

That evening, another doctor re-explains diabetes to me in child language. She balks when I tell her about Stacey and insulin injections and finger pricks and sometimes needing juice or sugar. She asks if I heard everything the doctor said. I know she is worried I overheard that I should’ve been dead or at the very least in a coma. I don’t want her to worry so I tell her Stacey was the smartest, had friends, played sports, and lived a mostly normal life. This comforts both of us.

“First I am a person, then I am a diabetic,” I would reassert a few years later. “There are worse things.”

Now.

My husband and I want him. We want the fetus I’ve carried for twenty weeks, the fetus this appointment confirmed is a son. We’ve planned for him for two years. Two years of researching the risks of highs and lows on fetal development, on breastfeeding, on me being pregnant. Two years of blood draws to check my three-month blood glucose average (A1C), to get it to stay below 6.3 because high blood sugars carry some of the greatest risks like respiratory distress syndrome, birth defects, and preeclampsia. Two years of eating at nine, noon and five-thirty with as little alteration as possible; of journaling each carbohydrate to see how it interacts with insulin so I can cut out the foods — pizza, pasta, cereals — that cause soaring highs. I maintain this strict control over my body, my disease and my life. It’s my choice to be proactive in caring for myself, my choice to bear new life.

Excessive preparedness works: my A1C is 5.0 when I become pregnant, 4.8 through twenty weeks. According to my numbers, I’m as healthy as – if not healthier than – your average non-diabetic pregnant woman. But it doesn’t matter; he has a disease. Like me, but not like me. Not like me at all.

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The first doctor says his disease, an undetermined congenital anomaly, is most likely a result of my diabetes but she hasn’t looked at my A1C results or my blood sugar tracker charts. She points at the ultrasound as she tells us our son will need spinal surgeries, that his spinal cord may not be protected by his vertebrae, that his brain may not be fully developed, that he may never be able to go to the bathroom. She starts the recording we wanted of him bouncing about and stretching his legs and tells us he may never walk or move his limbs outside of the womb. After she tells us these things she says, “But think about the good that you heard today.” The cross around her neck is flipped over, dangling in gold and refracting its light onto the dark ceiling. She says nothing of the choices I am able to make regarding my body and my fetus. I’m ugly-crying, blame and self-hate breaking themselves against each other, against my heart.

The second doctor asks us what we want to do. We think, based on the previous conversation, we have no option but to hope for the impossible: that somehow the ultrasound and the doctors are mistaken and our child is healthy. I squeeze my husband’s hand and more tears fall into both of our laps. Jaipur pulls at me, flashing like a projected slide behind my blinking wet eyelids.

Before.

I am sixteen weeks pregnant and our prenatal doctor gives us the all-clear. A relief I didn’t know I needed rips through my veins and cools the red-hot tension that had lived there since the pregnancy test.

The house is different when we get back, somehow fuller. Memories that haven’t happened yet fill my thoughts. There’s the kitchen where he or she will eat Cheerios for the first time and the living room rug we picked because it won’t stain easily. There’s the library where he or she will learn to read and the staircase where he or she is sure to fall at least a dozen times.

We line our Converses up on the front stoop – his yellow, mine orange, the fetus’ a royal purple – for the baby announcement we feared sending out a day earlier. These are our traveling shoes, shoes that encapsulate the adventure we’re on and the journey we want for our family.

Now.

Specialists in pediatric orthopedic surgery, high-risk pregnancy, and genetic disease study our scans for the next two days. Their consensus is that he will probably live, but he will need spinal surgery every six months until he’s fully grown, and there are likely other complications unseen. All of those mights and possibilities the first doctor mentioned still exist. But will he be in pain? And will he know he is in pain? They don’t know. They tell us to be optimistic like it has some bearing on his life. “Optimistic” becomes a vile word, a word to describe the less shitty side of a shitty situation. Optimism isn’t a certainty; the only certain thing is suffering will occur, there will be real and metaphorical needles and blades stabbing into the flesh, into the organs and tissues that keep us alive and tear us apart all the same.

Six hours are left to determine the fate of our fetus. Otherwise, due to state law, we will have no choice. It will be too late to start the process. We’re numb. We talk about the conversation we’d had about this or not this but something like this before we chose to have a baby. We make the decision based on what’s right for us, for me. We value the quality of life, not the length of it.

Before.

I wake sitting against the slatted door, my legs sticky with cranberry juice vomit. Everything is fuzzy and I don’t know where I am – or, I know I’m on the floor and there’s a closet behind me I think is mine but this house looks strange. Why is the light amber instead of white and how did I get over here? My husband stands over me with my unused emergency Glucagon case in his hand, his eyes large. Our bedroom looks like there’s been a struggle: empty juice boxes and crackers litter the nightstand and the floor glistens with what I hope is spilled juice but I know came from my mouth. My throat is on fire and I can’t form a sentence. He hands me another juice and tells me to drink it.

“You wouldn’t wake up,” he says.

“I didn’t do anything, right?” I ask because once, as a pre-teen, when I had a hypoglycemic episode I tried to jump off a second-floor balcony. “The baby?”

“No,” He takes my hand and pulls me to sit on the edge of the bed. “The ambulance is on the way.”

I’m sixteen and a half weeks pregnant and I’m sick every day, not just in the morning. My long-acting insulin peaks send me falling, falling, falling into the twenties and thirties, closer to the coma-inducing end of the spectrum than the 70 mg/dl to 120 mg/dl where I should be, no matter how much I eat or how we reduce it. This is the second episode of three that occurs during my pregnancy even as I wake to an alarm every hour to prick my finger. This is the image I recall when the first doctor says it’s my fault even though I know fetal abnormalities are caused by high sugars not lows. This is where I return when considering whether or not to continue putting my life in danger for my fetus.

Now.

The process starts the next morning with my phone call to formally request the termination, so someone I’ve never met can call me with the consent form. The afternoon passes and no one calls. I call back. A woman with a similar name tried to cancel her appointment and they cancelled mine instead. I get it straightened out and wait for the phone call, trying to ignore the fetus growing within me. He doesn’t kick. I’m still taking my prenatal vitamins and eating enough protein, just in case. A doctor calls me from her home at seven p.m. and asks if I’m sure I want to terminate. I am. She reads fast because most of the form doesn’t apply to my situation. It stings with repeated sentences telling me I’m ending a life. Ten minutes later I acknowledge the agreement between sniffles.

On Monday I meet three new doctors: the one who read my consent form, the one who will be performing the surgery in two days, and the resident who is using my case to learn this technique. I demand they check my blood sugar multiple times while I’m under because surgery, medications, and a morning procedure that coincides with when I take my long-acting insulin increase my chance of crashing. They agree. We go over the symptoms and side effects I should expect. My mind tunes out their words but the sheets are bright yellow and lime green so I can find them when I need them, color-coded by procedure and severity of symptom. Many of the paragraphs involve the words pain and blood.

The resident’s hands aren’t graceful. I curse and apologize for it while they insert the long, chopstick-looking laminaria into my cervix to stretch it for the main procedure. Forty-eight hours from now my cervix will be ready and my womb will be hollow, empty. The pain radiates through my insides and I grit my teeth. It should take ten minutes. After 25, the surgeon takes over, and makes the sticks fit.

I’m strong until the shower breaks me. My stomach is still rounded and he’s still there but not there. Cramps double me over and tears run down my cheeks but none of the sticks fall out. They said that could happen and holy shit does that sound terrifying. They’ve given me drugs to prevent infection. My blood sugar is a mess. It’s high and then it’s crashing, crashing so fast and so low I’m afraid of going into shock, of dying in my sleep.

The pink palaces are reaching for me, asking why I haven’t visited them yet.

Before.

It’s a risk, they say, to bear a child.

That’s better than forbidden, I think.

Now.

 

The 48 hours are up and we’re in the waiting room with another young woman and her friend. My mom tries to hug me but I keep everyone away, everyone but my husband. Too many people have hugged me since the ultrasound. A nurse takes me down a hall behind locked doors and tells me to undress behind a large curtain that separates my room from the other woman’s. I take my blood sugar with my own meter because the nurse says it isn’t necessary. It’s cold, so cold, and my blood sugar isn’t responding well to the medications. I ask the nurse who will monitor it while I’m under. “Hopefully we won’t have to take it again,” she says. I respond with something snarky, something about how that better be a fucking joke. I’ve controlled every detail of my disease for sixteen years and I’m not about to let some stranger unwittingly threaten my life for this half hour when I have to let go. At my adamance the anesthesiologist agrees to check my blood sugar three times over the surgery and to give me my insulin at nine a.m.

I’m going under and the pink palaces are somehow inside the white walls. People in cobalt blue scrubs flit around the room preparing one thing or another. They’re all wearing masks and talking to each other. It sounds like shouting but I know it isn’t. The surgeon holds my hand as I mourn, as I say goodbye. This is the image I return to over and over, this moment of humanity I know not nearly enough women receive when they’re about to undergo this procedure.

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After.

I’m home and I’m monitoring the bleeding, both literal and not. My body rebels, like it belongs to someone else. I lactate and become engorged, further evidence there is no one here to feed. The showers break me over and over, each time reminding me his home is there but he is not. My tear ducts empty. I drink sage tea, take B6 vitamins, sprinkle (dump) sage on my chicken and put cold cabbage leaves in my sports bra.

I’m a writer who can’t write. I’m watching movies I know won’t make me cry, buried under layers of blankets. I want to be in some foreign place with a foreign tongue and foreign food and nothing that holds a thought of him. I want to be anywhere but right here.

I’m angry. I’m angry with the people who think they should have the option to make decisions about my body, my life, and the life of my offspring. I’m angry at the articles attacking women’s bodies, women’s rights. I’m angry that because we’re running up on an election year men and women (but especially men in positions of power) think they need to talk about banning abortion, banning this human right to control one’s body. I’m terrified that if this thing, this awful, horrible thing, had happened to me a few years from now it might not have been possible to do anything about it. It might not have been my decision.

So I read. I escape into the words of my childhood (Island of the Blue Dolphins) and I think about all of the adventures I want to have, want to share with my husband and with the baby I’m going to bring into this world someday. I think about the fetus who showed me that the most unconditional, unselfish love can both break a heart and fill it at the same time.