Men aren’t particularly aware of this, but a woman’s pregnancy is marked off by regularly scheduled ultrasound scans. They scan the baby for anatomy traits, for signs of potential genetic defects, and for size. For most young parents, these visits are celebrated as an opportunity to see the baby for the first time. The otherworldly images that appear on the computer screen above the technician’s head are awe inspiring. Men have been known to weep with joy at the sight. It’s cool.
But for me and my wife, these visits were occasion for nightmares of agony and anxiety. Twelve weeks into my wife’s second pregnancy, we were told by her doctor there was a 1 in 66 chance that the baby would be born with Trisomy 21, a genetic disorder commonly known as Down syndrome. While still a long shot, these numbers represented quite a comedown from the 1 in 700 chance that my wife, as a woman under 35, would give birth to a baby with Down syndrome.
In order to find out for sure, an amniocentesis was performed. This procedure, involving the extraction of amniotic fluid from the womb with a large needle, would give us definitive proof of our daughter’s condition. As there is a chance that the test can cause miscarriage, doctors use it as a last resort.
We didn’t get the results of the amniocentesis for nearly a week, during which we played our usual roles: I the optimist, she the pessimist. She insisted that the results were pre-ordained. The baby had Down syndrome, we might as well get used to it.
While not a gambler, I preferred to emphasize the odds. “Think about it – 1 in 66. You’ve got a better chance of getting hit by a car crossing the street. I’ll take it any day.”
We had been perfecting these roles for the 4 or 5 years we had been married. Like most couples, we knew them well and played them with skill. And like most couples, the record was roughly even. There were times when I had sunnily promised success and found myself forced to acknowledge miserable failure. Just as often, she had forecast doom only to later admit that life was pretty good, after all.
When my wife’s doctor called, the results were not what had we had been hoping for. I was shattered. The doctor was nice enough. She stammered a few times. There were some clichés offered, but she was thoughtful and took the time to explain the medical specifics. She indicated she would be waiting to hear from us on the subject of whether or not we would continue with the pregnancy. She did this gently, and I was still too stunned to process what she was saying. I thanked her profusely for her help and said she would be hearing from us.
Then came the hard part. I had made a solemn oath to call my wife at work and tell her the results of the test. I didn’t have a clue how to do this. Nothing in my life had prepared me. It was the most difficult thing I’ve ever done.
We spent several days trapped in the emotional crisis zone that people drop into when a relative or a close friend dies. In spite of my optimism, the child had Down syndrome. We had lost a 1 in 66 bet. I was flummoxed. I couldn’t think of a single positive to emphasize.
The emotions we felt were so intense they began to manifest physically. The surprise punch to the gut is an apt metaphor. Only it’s not a metaphor, it’s real. Your stomach actually hurts as if you’ve been punched. You can’t breath. You can only taste tears. It’s brutal. We curled up on the bed next to each other and wept.
After several days the smoke began to clear. Support poured in from friends and relatives. We reached out to total strangers and received the gentlest sympathies. We began to see the situation more clearly. This was not some kid with Down syndrome coming to live with us, this was our daughter. Like any child, our daughter would need us. She would need our protection, our guidance, and our love. To our minds, that made her no different than our other daughter sleeping peacefully in the other room.
“In her appearance, mannerisms, and personality, she will be more a member of your family than she will be a child with a disability,” another parent of a child with Down syndrome told us. We were encouraged by such encounters. They reminded us that others had been through the same trials.
What we dreaded most was the possibility that our daughter would be plagued by leukemia, physical defects, or the chronic heart problems so many children with Down syndrome struggle with. The doctors wanted us to increase the frequency of the ultrasound visits in order to keep tabs on our daughter’s pre-natal development.
If for this reason only, we dreaded going for the ultrasounds. But these visits were made infinitely worse by the repeated necessity of explaining our daughter’s diagnosis to every secretary, technician, doctor, intern, and assistant that we encountered. It is not an easy thing to watch the reaction of a complete stranger to this kind of news. They flinch. They blink. They look away.
“Hi. We’re here to see Doctor So and So.”
“How many weeks are you?”
“Well, you don’t have to see Doctor So and So until you’re 26 weeks.”
“I know, but, you see, my baby has Down syndrome and they want me to come in every two or three weeks to see Doctor So and So.”
“Oh. Okay. Um. Take a seat, I’ll let Doctor So and So know you’re here.”
You can feel the eyes on you as you wait. Whispers. Why are they going ahead with this? Why don’t they terminate?
Only one pre-natal physician that we met treated us as if we weren’t crazy. Heart defects are common in babies with Down syndrome so we spent considerable time with the cardiac specialist. He was professional, direct, kind, and helpful. It made for a nice change. The severity of the kinds of defects he was looking for may have forced him to be more congenial. Then again, his particular medical specialty ensured that he dealt not just with expecting mothers, but babies as well. I suspect this gave him perspective that the pre-natal caregivers lacked. But that is just a guess. Maybe he was a nicer guy.
In the end, our daughter was born healthy. We named her Magdalena. She has suffered from a variety of chronic conditions typical of children with Trisomy 21, though none of them severe or debilitating. From the month she was born she has received early intervention therapies. She is attended to by a battery of caring, talented, and professional therapists who have shepherded her development and, in certain instances, ours as well. She is a great kid. She makes every one who takes the time to get to know her happy.
Sometimes I think I’d like to bring her back to the pre-natal wing of the hospital, just to show off how wonderful she is. But one of the best things about Magdalena is she never seems worried about yesterday. And she inspires the same in us.