Posted: Wednesday, November 27, 2013 5:41 pm Posted on November 27, 2013 Derek Quizon by Derek Quizon
This Thanksgiving, the family of Ladavian Terry, of Blacksburg, is celebrating his first birthday. That’s a landmark for any child, but it holds special significance for them — they weren’t sure he’d make it that far.
Ladavian was born with a congenital heart defect last November, and received a heart transplant at the University of Virginia Medical Center in March. His case is unusual, but not exactly rare — the hospital has performed seven heart transplants on children this year, said Dr. Thomas L’Ecuyer, the hospital’s chief of pediatric cardiology.
That’s a very busy year for the Medical Center, although L’Ecuyer said he can’t explain the trend.
“The diseases that require transplants don’t show up every day,” L’Ecuyer said.
About 3,600 Americans, including 300 children and teens, are on the heart transplant list, according to the U.S. Department of Health and Human Services. Ladavian’s mother, Ava Mills, and grandmother, Kim Kirk, say they hope his story helps promote infant organ donation — a decision no family wants to make, but one that could give another child the chance to live a relatively normal life.
“If you’re in that position, the life you can give is almost as important as the life you can save,” Kirk said. Doctors at LewisGale Hospital Montgomery immediately knew something was wrong with Ladavian when he was born. Mills said he came out discolored — he was pale blue, like a choking or near-drowning victim. The doctors, she said, couldn’t seem to pin down the cause.
“I didn’t know how to feel,” Mills said. “But I knew there was something wrong because I couldn’t get an answer.” Her anxiety grew as he was transferred, first to a hospital in Roanoke, then to the UVa Medical Center. That’s where doctors found the problem. Ladavian was born with only one ventricle, a chamber of the heart that pumps blood to the rest of the body; a normal heart has two.
Less than a month after he was born, Ladavian underwent open-heart surgery, but doctors weren’t impressed with the results. “It’s the first part of a three-stage procedure,” L’Ecuyer said. “We didn’t feel like he was a good candidate for second procedure.”
They gave Mills a choice. She could take him home and try to make him as comfortable as possible; in all likelihood, they told her, he would die in about six months.
The second choice was to put him on the heart transplant list. He would have to stay at the UVa Medical Center (about two hours away from her home), where he’d be on a ventilator at all times. And there was no guarantee he’d find a donor.
Keeping patients alive and finding a match are much more difficult when dealing with children, L’Ecuyer said. About 20 percent of children in need of a new heart die while awaiting a transplant. That number is about 1 in 20 in adults, he said. Children are more vulnerable to infection, he said, and supporting the most serious cases requires a lot of complex equipment. “There are not good options for a child of Ladavian’s size,” L’Ecuyer said.
Mills registered her son for the heart transplant list. For three months, Mills, Kirk and Mills’ daughter traveled back and forth between Blacksburg and Charlottesville three to four times a week. Ladavian’s father, David Terry, came when he could, although work often got in the way.
Ladavian spent that time on a breathing tube, and had to be kept enclosed to keep from getting an infection. Mills said she didn’t hold him between the day he was diagnosed and the day he was discharged following the transplant. “He was pretty much sedated and paralyzed at all times,” Mills said.
Ladavian went into surgery for the transplant on Easter Sunday. As is usually the case, his family had learned a new donor was available just hours before the procedure. Mills said she wasn’t sure how to react. Their gain, after all, had come from another family’s loss.
“It’s a bittersweet moment because you don’t want to act too excited,” Mills said.
After months of therapy, Ladavian’s condition is steadily getting better. He’s at home and eating solid food, although he still has to be kept in a sterile environment. He also takes medicine twice a day to keep his body from rejecting the new heart. L’Ecuyer said Ladavian will probably need another transplant in 15 to 20 years, but there’s no reason he can’t live an active life until then.
For Ladavian’s family, it’s a new start. “We have achieved almost-normalcy,” Kirk said. “The donor family made all of that possible.”
Mills and Kirk said they hope other families will make the same decision the family of Ladavian’s donor made. Ladavian himself is an organ donor, a decision Mills made when he was on the waiting list.
“Knowing how it feels sitting there waiting for your child to get better … I wanted to end that for some other parents, if that was a decision I was going to have to make,” she said. The family needs help with medical expenses. For more information, email Kirk at email@example.com, call (540) 961-2675 or visit www.facebook.com/LoveForLadavian.