Greenwood parents prepare for baby's birth, heart defect

GREENWOOD, Ind. (AP) - What should have been the steady beat of a tiny heart was a disjointed, irregular wobble.

Katie and Robbie Chastain were prepared to hear the heartbeat of their second child, Riley Marie. They waited during the ultrasound for the familiar "thump, thump" that they expected. But instead, the sound was two quick rhythms followed by a hollow pause.

The nurse didn't know what that meant and told them to wait for the doctor to come explain it.

"That's the longest 15 minutes of your life," Katie Chastain told the Daily Journal (http://bit.ly/1B2Cx5O ).

They learned that their unborn daughter suffered from a rare congenital heart defect called hypoplastic left heart syndrome. The normal flow of blood is blocked when the left side of the baby's heart does not form correctly.

Even before Riley is a full week old, she will need surgery to reroute blood flow and give her a better chance of survival.

"It won't ever fix it, but it'll reroute everything," Katie Chastain said. "Without the surgeries, she'll die."

Inside the Chastains' Greenwood home, the nursery is nearly complete. The walls have been painted a cheery, sunny yellow. A white wooden crib is set up in the center of the room.

The couple went through the same preparations getting ready for the birth of their first child, Lucas, more than two years ago. But they also are amassing boxes filled with special items, just for babies with hypoplastic left heart syndrome.

Parents from around the country have sent the Chastains special onesies that button from the side, to accommodate the IVs and feeding tubes that baby Riley will need once she's born.

One woman sewed baby legwarmers for the family to keep Riley's legs warm without having to deal with pants to change a diaper. Since the baby will not be able to eat at first, a set of special pacifiers will help develop a sucking reflex.

Most importantly, they've received encouragement from other parents who have gone through the same situation.

"No one in our family has really gone through anything like that before. So getting that kind of support from someone who has was nice," Robbie Chastain said.

Katie Chastain is in the 34th week of her pregnancy, with their baby girl expected to be born in mid-March. As much as they can, they've been preparing every aspect of their lives - themselves, their son, their home - for what will be a tumultuous change.

"It doesn't just affect us. It's going to change our son's life as well," Robbie Chastain said.

The Chastains were at the 20-week ultrasound when the heart defect was detected. During the course of the detailed anatomy scan, doctors amplified the baby's heartbeat.

The irregular beat was a clear indicator of hypoplastic left heart syndrome. The condition results from a series of problems with the heart, including blood chambers that are too small and valves that don't form correctly on the left side.

Heart defects are relatively rare, affecting one out of every 100 babies born in the U.S. Hypoplastic left heart syndrome is even more isolated, affecting one of every 4,344 babies born, according to the Centers for Disease Control and Prevention.

"This is one of the more complicated forms of heart defect," said Dr. Anne Farrell, a pediatric cardiologist at Riley Hospital for Children at Indiana University Health. "It's rare, but it's not that rare. We probably see 10 to 12 babies born here every day."

The Chastains were sent to a high-risk obstetrician with Riley. Their doctor confirmed that the baby had a weakened left heart.

Since then, the couple have been seeing a cardiologist, monitoring the condition of the baby and planning for the inevitable first round of surgeries.

Until the mid-1980s, this defect was a death sentence, Farrell said. The heart quickly became overworked and couldn't provide enough oxygenated blood to keep a baby alive.

But a series of surgeries now make it possible for the children to live increasingly long lives. The first recipients of this treatment are in their 30s.

"It's a palliative procedure, meaning we haven't fixed these kids. We haven't given them a lifelong fix," Farrell said. "But they usually do fairly well early on, and the survivability of these cases is getting better."

Soon after birth, the Chastains' baby will undergo the first of those operations. It is known as the Norwood procedure, where surgeons create a new main artery and connect it to the largest chamber on the right side of the heart. Additional connections are made that allow the heart to pump blood both to the lungs and the rest of the body.

The left side of the heart is what pumps oxygen-rich blood to the rest of the body, Robbie Chastain said.

"The surgery won't make the left side of the heart functional; it'll just make the right side do all of the work," he said.

More procedures will be needed when the baby is about 6 months old, and later between 18 months and 3 years, to make additional blood vessel connections and reduce the heart's workload.

While in the hospital, the baby will always be hooked up to monitors that will track every aspect of her health. Nurses will be available to help at the first sign of trouble.

But the Chastains know that they will eventually take their daughter home, and they'll need to take over all of the care.

"They've kind of proactively prepared us for that," Robbie Chastain said. "In the hospital, there's always a nurse or doctor nearby. We can relax there, but when we're home, it'll be hard to relax."

Before they leave the hospital, they'll have to take over the bulk of care for their daughter. Even after they're back at the home, nurses will check in on the family, asking them to weigh their daughter every day to track her progress.

Recommendations can be made for home nursing, if the family wants it.

Katie Chastain is seeing a doctor twice a week at prenatal diagnosis at IU Health University Hospital. They will eventually work with a surgeon to discuss the operation, planning out details and determining when to schedule the first procedure.

At 39 weeks, they'll induce labor, Katie Chastain said.

After receiving the diagnosis, Katie and Robbie Chastain needed to reach out to other families to learn what it would mean. They became active with Sisters by Heart, a nonprofit organization that connects mothers of children with congenital heart defects.

An online community called Linked by Heart has provided a way for Katie Chastain to reach out to other Indianapolis-area parents whose children have hypoplastic left heart syndrome. The practical information they've received has been invaluable as they prepare for an uncertain start to their daughter's life.

But more than that, talking with other parents whose children have dealt with this kind of defect has provided a measure of hope for them to cling to.

"Looking online and reading people's blogs, hearing how well they're doing, that has meant the world," Katie Chastain said. "You see a girl with this who is 5 years old, or one that just turned 6, that's encouraging."

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Information from: Daily Journal, http://www.dailyjournal.net