washingtonpost.com
Couple's Wish: A Better Heart for Baby

By John Kelly
Wednesday, November 26, 2008

The Steidings were sure it would happen eventually: Lisa would be a mom and Adrian would be a dad. They'd been together since they were 17-year-old high school students in Fairfax County. They'd dated for eight years. They'd weathered Adrian's deployments with the U.S. Navy. They were married in 2000. Then, as Lisa worked for her family's swimming pool service business and Adrian served as a Fairfax County police officer, the Gainesville couple waited for the baby that would surely come.

But it didn't. And when it became clear that having a baby wasn't going to be as easy as all that, they did as many couples do and tried in-vitro fertilization.

In the first attempt, the egg didn't implant. After the second attempt, Lisa experienced the brief flicker of hope that's known as a chemical pregnancy. Doctors performed the third attempt after laparoscopic surgery to remove a blocked fallopian tube.

"It was the last shot after the surgery," Adrian said of their third try with the fertility doctors. "Most insurance companies only cover three IVF attempts."

And then, success! Lisa was pregnant. But at Lisa's routine 20-week sonogram, there was an awkward silence from the technician probing her growing belly.

"I'm sorry," the technician said after the Steidings asked what the problem was. "I'll have your doctor call you."

What the technician couldn't see in the murky greens and whites of the computer display was a healthy heart. The left side of the little girl's organ hadn't developed, and while the fetus was doing fine inside Lisa -- depending on her mother for oxygen -- a pitiless clock would start ticking once she was born.

"They gave us every option, from terminating the pregnancy to bringing the child home and letting nature take its course," Adrian said.

Babies with what's called hypoplastic left heart syndrome usually look fine when they're born. A vessel called the ductus arteriosus moves blood where it needs to go. This vessel gradually closes in the days after birth, which is not a problem for babies with a healthy heart. But babies with the syndrome are slowly starved of oxygen-rich blood. In just the last 20 years techniques have been developed to rebuild these tiny hearts, and after days of anguished research, Adrian and Lisa learned that Children's National Medical Center offered them the best hope. They started seeing Mary Donofrio, director of the hospital's fetal heart program.

On Nov. 3, about a month before Lisa's due date and after her latest echocardiogram, the couple met with Dr. Donofrio in a small office at Children's.

"I'm getting bigger," Lisa said. "I'm ready to pop. But I can't really complain. It's not too bad, except the part when she's sitting on my bladder."

Said Dr. Donofrio: "It's a big baby, which is certainly in our favor."

Babies with hypoplastic left heart syndrome need at least two operations: one at about 6 months and another at 2 years. Many need open-heart surgery at just a few days old, and that's what the Steidings and their doctor were hoping to avoid. A chubby 6-month-old can face the rigors of the operating room much better than a newborn.

"As the baby's cardiologist, my job is to gather as much information as possible, then deliver that data to the surgeon," Dr. Donofrio explained. "What he does for your particular baby is going to be dependent on what your baby's heart is like. . . . It's not just a matter of sewing this to this. It's a matter of re-creating the heart."

Of one thing, Dr. Donofrio was certain: It was time to see what they were facing. The baby was big enough not to wait the four weeks until she reached full term. How did a Nov. 17 birthday look?

"Wow," said Adrian, taking it all in.

"Too much information," said Lisa. "I'm sweating."

Tomorrow: A baby is born.

Helping Children

So far, readers of this column have donated $7,205 toward our goal of $500,000 for Children's Hospital. We have a long way to go, but your tax-deductible gift can help us get there. To donate, write a check or money order payable to "Children's Hospital" and mail it to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390.

To donate online using a credit card, go to http://www.washingtonpost.com/childrenshospital.

To contribute by phone using Visa or MasterCard, call 202-334-5100 and follow the instructions on the recording.

My e-mail: kellyj@washpost.com. "John Kelly's Commons," my blog: http://voices.washingtonpost.com/commons.

View all comments that have been posted about this article.

© 2008 The Washington Post Company