When the doctor began talking about worrisome things, it was like being startled awake from a pleasant dream.
For almost an hour we’d been hypnotized by the kaleidoscopic black-and-white images of our unborn child, featured on a screen above the hospital bed. The small room was dark and warm and permeated by the soft drone of electronics. The technician moved her wand across Desireé’s belly and from time-to-time re-applied the ultrasound gel.
“That’s the head and chest. You can see the heart beating . . .”
Desireé was flushed and happy in her hospital gown. It felt ceremonious in that tiny hospital room. We were gonna be first-time 30-something parents. For us, it was momentous.
“Do you want to know the sex?” asked the technician.
We did.
She zoomed in on the baby’s crotch so we could see for ourselves. But neither of us could make out anything.
“See. It’s a girl,” she said and we took her word for it.
Desireé was thrilled. Her eyes welled up. She squeezed my hand ecstatically. Desireé really wanted a girl, so much so that I was a little afraid of it being a boy. I didn’t want her to feel let down.
The technician continued her work: typing notes and capturing stills of the baby at different angles.
Desireé and I were in our own little bubble, exchanging warm glances, knowing smiles, and punctuating everything with a hand squeeze.
At some point the technician must have noticed something. She must have cataloged the abnormality along with everything else. But it wasn’t her job to tell us about it. For that, she was probably thankful. She finished the ultrasound in silence and left us to wait for the doctor.
“The hospital offered us a second opinion. We both hoped there had been an error. I was told by friends and family that hospitals make these kinds of mistakes all the time. ”
The doctor seemed tall (maybe because I was sitting down). She had bleached blond hair that was, perhaps, grey at the roots. She introduced herself and then peered for a moment at the contents of the manila folder she was holding.
“Now, we’re not sure of the cause, but we did see something of concern in the ultrasound.”
Doctors often use certain watered-down words in order to communicate bad things. “Concern” is one of those words. “Concern,” from a doctor can sound like a death sentence.
Desireé was tensed up. The doctor continued to talk.
It’s a strange experience to be dragged from a sense of well-being into a new uncertain darkness. The whole universe can be reinvented in an instant. Sometimes really bad things happen and you have to live with them for the rest of your life. Sometimes life is a totally indifferent asshole.
“The baby is missing two fingers on her left hand. We’re not sure of the cause.”
In horror movies there’s this moment--when a character realizes that a body part is missing. The camera pans to the severed limb, to the stump, to the characters face. We see the victim’s panic--the sudden desperate desire to repair what’s been lost. But there’s noting anyone can do.
I felt that horror-movie-horror in the dimly lit hospital room. I desperately wanted to recover the fingers that were missing. Where were the fingers anyway? Floating around in the womb somewhere? Shouldn’t a nurse be running for a bucket of ice and a sewing needle?
Our doctor put more gel on Desireé’s stomach and showed us the baby’s left hand on the monitor. The index and middle finger weren’t there.
“Missing fingers can be an indication of certain genetic disorders. It could be isolated or it could an indication of Down Syndrome, a skin disease, or something else. It’s hard to know at this point.”
What if we’d created an abomination? A lobster-child. Was it too late to stop it, before we unleashed it on the world? Could we start over?
The tears that coursed down Desireé’s cheeks were killing me. This resonated with her in deep, motherly ways that I could hardly fathom. This little creature had come to life inside her. She felt responsible for its life and safety.
There was a test, the doctor told us---an amniocentesis. They would stick a needle into Desiree’s belly and extract some genetic material. This was the only way to find out more about the condition and rule out certain diseases. The doctor said there was some risk of miscarriage in the following days after the test. They gave a Desireé a paper to sign. We didn’t know what else to do.
After they needled poor Desireé, who was holding back tears and squeezing my hand with all her might, we were ushered into another room to talk to a genetic counselor.
Who knew there was such thing as a genetic counselor and that she would be waiting for just this sort of thing to transpire? How many times did she do this a day? How often was ‘missing fingers’ an issue she had to deal with?
The genetic counselor was in her early 30s—professional, and a little hippy-ish at the same time. She brought Desireé a box of tissues and a glass of water. She talked about some of the bad things that the genetic tests might reveal.
“Hopefully, we should be able to rule out a few of the worst genetic diseases in a few days when we get the initial results. That would include conditions that will not support life outside of the womb such as Trisomy 22, as well as severe conditions such as Down Syndrome. You’ll want to discuss these possible outcomes and whether you want to end the pregnancy under any of these circumstances.”
We made it through the following days without a miscarriage. We ate and slept and worked despite the gnawing doubts and fears we carried with us. We scoured the Internet for disease definitions, and stories from parents that had been through similar troubles. There were extreme and mild cases. Most involved more than just missing fingers. There was a condition called Amniotic Band Syndrome where strands of the uterus lining can dislodge and wrap around the fetus, causing severed limbs, digits, and/or a cleft palette.
Three days after the initial ultrasound, we did get some good test results that ruled out Down Syndrome and that whole, “won’t be able to survive outside the womb” deal.
We began to think in terms of having a disabled child rather than a dead one. We started to get hopeful again. My mother said she was going shopping for us (now that she knew it was a girl). I told her ‘mittens not gloves.’
The hospital offered us a second opinion. We both hoped there had been an error. I was told by friends and family that hospitals make these kinds of mistakes all the time. Maybe our daughter was just clasping her hand in a weird way.
We ended up back in that same hospital room again. Both the ultrasound room and Desireé’s womb had become more dangerous and unpredictable places over the last few days.
Our new Doctor was a friendly, grandfatherly type.
Disappointingly, the results were the same. Two fingers were still missing, but the new doctor assured us that everything else looked normal.
“We don’t always know why this happens. It’s relatively rare,” said the doctor. “Sometimes a few fingers just don’t grow and nobody knows why. Perhaps, because of restricted blood flow. Regardless, your child should be able to live a relatively normal life.”
“Relatively normal life,” is another one of those doctor phrases. It’s innocuous, but probably useful in situations like these.
Some of us are robbed of things before we’re even born and that sucks. There’s no two ways around it. But one thing that this baby girl won’t lack, is unconditional love (and a killer bionic-prosthesis if I have anything to say about it).
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Chris Bolton
is a rainy-day musician, writer, storyteller and audio documentarian living in Portland Oregon. He works for CD Baby and has a number of blogging projects including Nifty Social Media Blog and To Write a Song. He’s also the creator of http://storylifepodcast.com.