Published Friday, February 13, 2004 http://www.theindependent.com/

Congenital Heart Defect Awareness Day

Much to smile about

8-month-old thriving after two open heart surgeries

Last modified at 12:03 a.m. on Friday, February 13, 2004

By Mike Bockoven
michael.bockoven@theindependent.com
photo: news
 
Independent/Scott Kingsley
Leila Smith is held above the head of her mother, Marci, for a portrait at their Grand Island home. Leila, who was born with a congenital heart defect, has undergone two open heart surgeries since she was born last May.

Leila Smith has red hair the color of her mother's on top of her round head, bright blue eyes and one of the most shy and beautiful smiles you've ever seen.

What she doesn't have is a left side of her heart that works.

Leila was diagnosed several hours after being born on May 24 with hypoplastic left heart syndrome -- a congenital heart disease in which her heart doesn't pump enough blood. Eight and a half months and two open heart surgeries later, Leila is at home in Grand Island, looking, playing and acting like any other child.

"She won't be an Olympic sprinter, but that's about it," her mother, Marci, said. "She's not going to suffer any earth-shattering limitations."

Leila is one of roughly 40,000 babies born with some sort of congenital heart disease every year, according to the Web site www.tchin.org, which is a community of parents dealing with congenital heart disease. Saturday is also national Congenital Heart Defect Awareness Day.

Leila's success story isn't without a caveat or two -- she'll have to undergo one more open heart surgery at the age of 3 to complete the Norwood procedure, in which the right side of the heart is rerouted to pump blood, something it's not designed to do.

She will also have to take medications daily and see a cardiologist regularly for the rest of her life.

When Marci and her family were first faced with the prospect of treating a daughter with a congenital heart disease, things happened extraordinarily quickly. There was nothing apparently wrong with the newborn Leila, except for the fact that she wouldn't eat.

"They ran some tests, and when they told us what was wrong the doctors said, 'This is what we think it is, and they're sending the helicopter,'" Marci said. "We had three choices: compassionate care, which was basically letting her pass on, a heart transplant or this Norwood procedure."

Given that only around 250 infant hearts are available each year, the family decided on the Norwood procedure, which also carries certain risks. Children can die, often unexpectedly, between the first and second procedure.

Little Leila, however, fared well. The family, which had a presence in Omaha where Leila was being cared for, had a different challenge.

"We spent from May to September in Omaha," Marci said. "It was tough because my husband (Daren) had to come back to work at some point, so he did a lot of traveling while I stayed in Omaha."

While they were away, friends and neighbors helped out by mowing the Smiths' lawn, getting their mail and holding a toys-only garage sale and a cookout at the Grand Island Surgery Center, where Daren works, to help the family with medical expenses.

Now that Leila is on the mend and growing quickly, making up for lost time as it were, Marci said she's very thankful that things worked out as well as they did. While Leila is like any other little girl in many respects, the family still has to be aware of germs, because a cold or flu could seriously complicate things.

"You feel like you have this piece of fine china and you don't want to break it," she said. "At the same time, you can't limit her. We're more careful about colds and germs, but we do take her out. We're not afraid like we used to be."

Marci also noted that the surgeries for Leila's condition are not a cure but rather a "fix" to get her by. Research, new surgical techniques, devices and medications will be needed to ensure her longevity, Leila's mother said.

Because of their experience with Leila, Marci has become an advocate for parents dealing with congenital heart defects and is working with a local support group called Midwest Heart Connection. Until that effort gains momentum, there is an online community at www.tchin.org.

"For me, it was a blur when we found out and all this stuff started happening," Marci said. "If we can provide some support to someone who is in the really scary part, that would be great."