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“He or she”—she looks down at her file—“do you want to know the sex?”
“Yes,” Jason and I say in tandem.
“Okay, he then—it’s a boy.”
“Oh my god,” Jason murmurs. “I’m having a son.”
“Allie. Jason. You need to understand this genetic disorder is not the same as Down’s Syndrome. Life expectancy with Down’s Syndrome is sixty years.”
I swallow again. Harder this time, as if there’s a walnut in my throat. “And with this? What can we expect with our baby?”
She sighs big, as if not wanting to answer. “Anatomically, babies with Trisomy 18 can be low birth weight, have smaller-than-normal heads, clenched fists, short breastbones and extra skin folds at the back of the neck. Physiologically, they can suffer from heart defects, seizures, high blood pressure, and kidney problems.”
My hand flies to my mouth as I absorb this information.
“There’s more,” she says sadly, and my eyes seal shut, not knowing what could be worse than what she’s already said. “Only about fifty percent of babies with Trisomy 18 are born alive.”
I’m gasping for breath, barely registering the rest of her words when she says, “Ninety to ninety-five percent will notsurvive the first year. Most of them will pass within the first two weeks of life.”
I almost slide out of my chair. I want to fall to the ground and be swallowed up. I want to wake up from this nightmare.
Jason drops my hand. He’s stunned into silence. Shell-shocked like me.
The doctor is quiet for a beat as we process what we’ve been told.
Jason is the first to speak. “Is there anything we can do? What do most people in our situation do?”
Dr. Miller sighs. “Statistically, a great number of women choose termination considering the life-limiting consequences of the diagnosis.”
My eyes snap open. “You mean abortion?”
She nods.
“That,” Jason says. “Let’s do that.”
I sneer at him and his quickness to agree to such lunacy. “I’m not aborting our baby.”
“You heard the doctor. Odds are, he’ll die before birth anyway. And if by some miracle he doesn’t, he will shortly after. Why would you put us through that, Allie?”
“Because he’s our son.” I put a protective hand over my belly. “And the test could be wrong. Right, Dr. Miller? You said ninety-seven percent. That means there’s a chance it’s wrong. Three percent is not nothing. The test could be wrong.”
The doctor nods but adds, “Allie, I don’t want you having false hopes here. Over my career, I’ve never seen that happen. Of course you should wait for the amniocentesis to make any decision. There is another test you could do today even. It’s called chorionic villus sampling. It involves inserting a thin tube through the cervix into the uterus to collect a sample of tissue.Both tests would confirm the diagnosis, but each comes with a statistically significant chance of miscarriage.”
I stand and put distance between myself and the two others in the room. “I’m not killing my baby. I don’t care what any test says. In fact, I’m not going to have any tests. Especially not ones that can cause a miscarriage. I don’t care what he has. If he dies inside me, so be it, but I’m not killing him.”
“If that’s your choice, I’ll support you and help you any way I can,” Dr. Miller says. “But to be clear, and just so you fully recognize the severity… Allie, Trisomy 18 is a chromosomal abnormality that’s incompatible with life. Do you understand what I’m saying?”
I nod.
“Your baby will not survive. If he makes it to delivery, it will still only be a matter of time. A day. A week. Probably not even a month. If you choose to continue the pregnancy, you will have to live with that certainty.”
“I’m not getting an abortion.”
Jason stands, walks over, and puts his hands on my shoulders, looking me straight in the eyes. “Allie, there isn’t a choice here. You have to get one. The alternative is horrific. I won’t just sit around and wait for him to die. It’s crazy. It’s inhumane. And it’s not fair to any of us.”
“There is a human being growing inside me.” I’m sure I sound a bit hysterical, but I’m unapologetic as I’m apparently the only one here set to fight for this baby. “He’s our son, Jason. I can’t just kill him.”
“And I can’t just sit around and watch.”