A Perfect Baby

The following story, by Jennifer Busik, is excerpted from A Cup of Comfort for Mothers to Be, Stories that celebrate a very special time.

At my six-week postpartum visit, Dr. Wigginton hands me a small box with a pink lid. Inside is a stainless steel, long-handled baby spoon engraved with my daughter’s name and birth date.

“Thank you,” I say, and then wait, because Dr. Wigginton is looking everywhere except at me, his face pinched with concentration. He is trying, I soon realize, to find the right words; there is something he wants to say.

Finally, he looks at me. “I just . . .” he begins, but it takes two tries. “I just wanted you to have a perfect baby.”

Now, I am the one who can’t look him in the eye.

Everyone looks forward to the twenty-week ultrasound—to that first glimpse, grainy and shifting, when the ultrasound tech says things you’ve been waiting so long to hear: “It’s a boy,” or, “See that, she’s sucking her thumb,” or, “Oh look, toes!”

I took a videotape to my ultrasound so that my husband could see it later. He’d planned to come, but our older daughter woke up with a fever of 102, so we decided to cancel the sitter, and he stayed home instead.

So, I was there alone to hear, “Looks like a girl,” and “There’s her heart,” and “Wait right there, I want the doctor to see this.”

I laid on that table for far too long while the doctor and the ultrasound nurse searched and searched for what they weren’t seeing, and examined and re-examined what they were seeing. They couldn’t find my baby girl’s diaphragm, the muscle that supports the organs in the chest; they couldn’t find lung tissue. They did find a small anomaly—Dr. Wigginton called it a cyst—in my baby’s brain.

That’s just not how twenty-week ultrasounds are supposed to go.

At home, I looked up diaphragmatic hernias—conditions in which the diaphragm doesn’t form properly in the developing fetus. What I found was scary; half to three-quarters of such babies die. Mortality is higher for girls (like mine), for babies with multiple problems (that troubling cyst in her brain), and for babies with low birth weights (at one point the doctor had extended my due date three weeks based on her size, but I told them they had to be wrong; she was just small, for some reason).

I also looked up pulmonary agenesis—the condition where one or both lungs fail to form. Bilateral (both sides) pulmonary agenesis is exceedingly rare; there were only eleven recorded cases worldwide as of that year. The sources I read stated that the condition was “generally incompatible with life.” Unilateral pulmonary agenesis is very rare, too, but is more common than bilateral and usually accompanied by other developmental defects of varying severity. Either is worse than a diaphragmatic hernia. I feared that I would be case number twelve in recorded history of a woman whose baby was born without lungs; that not only would I have to bury my baby, but that I’d also have to spend the next thirty years fending off scientists wanting to study my case.

Friends and relatives offered what support they could, but it wasn’t much. We were on everyone’s prayer list. My grandparents offered us one of their burial plots, should we need it. It was the only concrete thing anyone could do.

The latest imaging technique at the time was the three-dimensional ultrasound. I read articles about this technological wonder that could give you a sepia-toned image of your unborn baby’s face. In larger cities, women could go to the mall and have their baby’s “portrait” imaged for several hundred dollars. In out-of-the-way western Kentucky, the only way I was going to have access to such a wonder was to need it. At twenty-five weeks, my husband and I traveled out of state to the nearest perinatologist’s office, where I laid for hours on a table while my baby was poked and prodded, measured and examined, first by a technician, then by the doctor herself—a youthful, smartly dressed woman whose name was Turnquest-Wells.

Dr. Turnquest-Wells said, “What we’re seeing is a neural tube defect, a condition called ‘spina bifida’—”

Spina bifida? Not pulmonary agenesis? Not diaphragmatic hernia?

I said, “But she has lungs?”

Dr. Turnquest-Wells seemed taken aback. “Um, yes,” she said.

“And she has a whole diaphragm?” I asked.

“Uh, well, yes.”

“So, it’s just spina bifida?”

“Ah . . . yeah.”

“Oh, thank God!” I said.

Dr. Turnquest-Wells looked at me like I was nuts.

“They had me flat terrified coming in here,” I explained. “They told me my baby had no lungs. They said maybe she had a herniated diaphragm—half of those babies die. But I know people with spina bifida, and they grow up, and they have lives, and you just don’t know what a relief this is to me!”

“Oh. . . . Okay,” she said. She looked carefully at my husband.

I could tell she was thinking perhaps I didn’t get it; somehow I had missed that my child would be born with a serious birth defect—and spina bifida is certainly serious. It’s a malformation of the spine that causes damage to the spinal nerves, and like any other spinal injury it can result in paraplegia, urinary and bowel control problems, and myriad other chronic health issues. But people with spina bifida usually live and most have normal intelligence.

When we left, Dr. Turnquest-Wells gave me a sepia-toned portrait, three-quarter view, of my baby with her fist in her mouth. I felt as though a great weight had been lifted from my heart and a pall had withdrawn from my eyes. I would not have to bury my baby.

We named her “Cora,” after the young woman in James Fenimore Cooper’s novel, The Last of the Mohicans. Our research revealed that Fenimore Cooper coined the name and that before his novel Cora was not used as a woman’s name. Today, it has fallen out of favor and is considered old-fashioned by most. But my husband and I liked the name, and we bestowed it on our unborn girl.

There were more doctors to see. Cora would have to be born at a specialty medical center far from home, and we chose Indiana University Medical Center in Indianapolis. Cora would need two surgeries shortly after birth; these would be done at adjacent Riley Hospital for Children. Cora’s delivery, by Caesarian section, would be performed by Dr. Lillie Mae Padilla, a small, reassuringly energetic obstetrician and perinatologist, whose native language was Spanish.

Dr. Padilla examined me and Cora in another marathon ultrasound session, which we drove through a blizzard to get to. Partway through the exam, Dr. Padilla said, “I hate to keep saying ‘the baby, the baby.’ Does she have a name?”

“Her name is Cora,” I said.

“Heart,” said Dr. Padilla. When I frowned, she said, “Cora means ‘heart’ in Spanish. It’s a woman’s nickname, short for ‘Corazon.’”

So, we were wrong about Fenimore Cooper coining the name, but right about the name itself. She is Cora, our dear little heart.

Cora was born on May first—May Day. Six weeks later, Dr. Wigginton—the one who first knew my baby had a problem—gives me a commemorative spoon. “I just wanted you to have a perfect baby,” he says.

I think of Cora: Cora, who spent twelve days in neonatal intensive care. Who came through three surgeries in her first two days of life. Who may or may not walk; who may or may not have full control of her bowels. Who may or may not be a doctor, a musician, a bookworm, a dog trainer, or a gardener. Who may be tall or short, pretty or homely, generous or stingy, vivacious or taciturn. It is too soon to know. Just like it would be too soon to know these things with any other baby. Who can say what Cora might do, how she might be?

Later, when Cora is with me, I see my doctor out in public. We walk over to say hello, Cora and I, she with her bright blue eyes and rosebud mouth, I with my heart on my sleeve and in my arms.

“I want you to meet someone,” I say, holding her up. “This is Cora. She’s my perfect baby.”