For One Woman, An Unexpected Gift

A Mother Comes to Terms With Her Child's Disability

Physical therapist Lori Kushiyama, left, watches over Adara Morgan as David Morgan and Abigail Braithwaite interact with their daughter, who has Down syndrome. (By Leah Nash For The Washington Post)

At the beginning of the year, the American College of Obstetricians and Gynecologists came out with the recommendation that all pregnant women, regardless of age, be screened for Down syndrome early on. As a new parent of a 9-month-old daughter who happens to have Down syndrome, this news leaves a bad taste in my mouth.

This issue is bound to bring up a lot of contention in the abortion battle, and I don't care to step into that fray beyond stating that I am pro-choice. I do, however, feel the need to say something about the realities of life with a child with Down syndrome.

Although there have been moments over the past nine months when I have indulged the fruitless wish that my daughter didn't have Down syndrome, I have never for a moment wished that I didn't have this cheerful, vivacious person in my life. Sure, it is stressful and sometimes frightening to be the parent of a child with a disability. But I think you would be hard-pressed to find a parent who will tell you that it isn't stressful and sometimes frightening to be the parent of any child.

There are many ways to tell our family's story. The most optimistic version starts today and works backward. The most pessimistic starts with our meeting in the hospital with the geneticist. I think the most accurate begins with the end of my pregnancy, just before Adara entered our lives.

My husband and I were not great fans of modern American medicine, and so we had been planning a home birth. I'm 31, and I had a wonderful, easy pregnancy until the last month or so, when I developed a mild case of preeclampsia, which is characterized by high blood pressure in the mother and can cause low birth weight and other problems in the baby. No more visits with the midwives over a pot of tea in our living room. Now I was spending up to four hours a week in the doctor's office, getting blood drawn, attached to a fetal monitor, waiting and worrying. Now, nothing was certain and we felt like we were at the mercy of this big, inscrutable medical community.

In part to put an end to the worrying, we decided to induce labor as gently as we could. There were complications, and Adara was born by Caesarean section at a hospital just after 11 on a Monday night. Though this was far from our original plan of a home birth in a birthing pool, we were just delighted to have a baby. I will never forget the moment the nurses from the neonatal intensive care unit left the room, assuring us that our baby was healthy and strong, if a bit small.

Relief swept over me, and I focused on the little bundle of eyeballs and red hair that David brought over to my bedside to greet me. When I said hello, her eyes swiveled to my face, and we shared a stare of recognition. Here was the natural connection I had been waiting for.

The relief lasted until about eight hours after Adara's birth, when her pediatrician came into my room to meet all of us. As she poked and prodded with a clinical tenderness, she started a stream-of-consciousness monologue of what she noticed about our baby. She was muttering away about ear placement, the spacing between the toes, and that unfortunately named simian crease. The veil of uncertainty began to drop over us once again as we wondered what could possibly be wrong with this perfect child so freshly introduced to the world.

The pediatrician insisted she wasn't convinced there was anything wrong with Adara, but there were enough markers to merit a genetic test: Just another blood draw; it could be done in the hospital, and the results would take up to two weeks to come through.

It turned out that we got the diagnosis of Down syndrome just three days after Adara was born: The hospital expedites the results if they are irregular.

Our time in the hospital is something of a blur, though certain clear images come through the fog. There was the wretched meeting with the geneticist, who, as David said, had the bedside manner of the two-by-four he should have been hit over the head with. There was my sister bringing homemade food and playing Scrabble with my stepbrother on the window seat. Adara meeting her grandmothers, a grandfather and a great-grandmother. I remember watching David sleeping with his new baby on his chest in the early-morning hours; the three of us trying to share the hospital bed on the night we learned the diagnosis, sitting together and comforting each other in our fear and confused grief; and throwing open the curtains in an attempt to escape that little room.

And then, on Friday, they let us go home. We walked into our house, cleaned from top to bottom by my mother and sister. The refrigerator was full of food, and there were fresh, bright flowers in every room. David's family arrived in tides to visit and eat with us and meet Adara, and we had a wonderful weekend, seeing for the first time that there might be some hope for normalcy to return to our lives.