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Henrico girl gets a new heart, as a family waits to come home together

Posted at 12:15 AM, Feb 16, 2016

HENRICO COUNTY, Va. -- Organ donation is a difficult topic to discuss, especially for parents whose child has been involved in a terrible accident.

But a Henrico family says it has saved their little daughter's life. That’s why they hope hearing their story will help you at least start the conversation.

Michael Campbell's heart is in two places. He walks his fifth grader, Michelle, to school each day, then starts an hour-long commute, but not to his job as a manager at Walmart.

For most of January and a week in February, Campbell would head out each day to Charlottesville, to see his wife and other daughter, Ayla.

Ayla

Ayla

With a month’s family leave from Walmart, he’s had plenty of time to consider the challenges his family faces. "How much longer is this going to be going on?” he asked. “How much longer is our family going to be separated?”

Ayla's parents

Ayla's parents

Four-year old Ayla has been at UVA Medical Center since January 10, requiring Campbell's family to be split temporarily, and for two sisters to spend a long time apart,  "[Michelle’s] always been there for her sister and she's looking forward to those days when Ayla's annoying her again because she misses her that much," Campbell said.

The family’s story began five years ago, when Campbell and his wife Catherine heard the words every expecting couple at 20 weeks fears the most. "The nurse doing the ultrasound, said, 'Hmmm, there might be an issue,'” Campbell said.  “She said, 'I’m not for sure, but I think the heart's not forming right.'"

Ayla was born with Hypoplastic Right Heart Syndrome, essentially half a heart.  Her parents were told she would need at least three major surgeries. The first was at birth, followed by a second one four months later.

Ayla

Ayla

But shortly afterwards, Ayla suffered a heart attack and stroke. "She was dead for 25 minutes and they had to resuscitate her,” Campbell said. “When she was brought to, her heart developed a leaky valve."

With her heart steadily weakening at age two, rather than undergo that third surgery, the Campbells put Ayla on a regional transplant list and moved from Stafford County to Henrico, to be closer to UVA Medical Center's renowned transplant program.

Somehow, despite the setbacks, Campbell says, developmentally, Ayla was not that far behind children her age. "She doesn't talk as much, she says basic words, but she has learned sign language and she actually knows more sign language than I do,” said Campbell. “So sometimes when she talks and she signs something, I'll have to get her big sister to know what she’s saying."

Ayla

Ayla

But by early January of this year, Ayla was struggling; time was running out. Everyday her parents could see, and hear, her struggle.

"When she saw me one night after I came home from work, she got up and ran across the living room floor to me, and gave me a big hug, shouting 'Da-Da!" all the way,” Campbell said.  “But by the time she got to me, she was out of breath and wheezing."

That very day, Saturday, January 10, the call came.

It was what they had been hoping, waiting for. But at the same time: "Absolute terror. We're relieved that the day is finally here and we're terrified that the day is finally here," Campbell said.

As the moment arrived, and the surgical team came to take Ayla back, the little girl sensed from her emotional parents that something drastic was happening.  "As soon as they came to take her out of my arms, she woke up and grabbed ahold of us and didn't want to let go," Campbell said.

But 18 hours later, Ayla had a new heart.

Ayla

Ayla

Then, the crucial first month of recovery began. "She recovered very quickly, but her body started forming some fluids and she took a turn for the worse,” Campbell said. “She was in a lot of pain, constantly. So she was on constant morphine."

Over the following four weeks, Ayla had a number of invasive procedures, including reopening her chest plate to fight an infection.

Dr. Thomas L'Ecuyer, a professor of pediatrics and the Director of the Pediatric Heart Transplant Clinic at UVA Medical Center, said post-transplant issues are typical, and stem from the body’s ongoing effort to reject the new organ.  But they’re usually manageable, he said.  "I've taken care of children before, that after their transplant were able to play on high school sports teams, including basketball and tennis," said L’Ecuyer.

He says Ayla's ups and downs since getting a new heart are part of the recovery process, and points out battling rejection gets much easier after three months. "I expect a very good activity level, and I expect her to be able to go to regular school when it's time to do so,” said L’Ecuyer. “I expect her to spend very little time in the doctor's office, even less time in the hospital."

As Ayla and her family journey on this new road, Campbell acknowledges a haunting reality: another family had to suffer a terrible loss so his little girl could have a chance.  It was a heavy load for a deeply religious man and his family.

Michael Campbell, Ayla's father.

Michael Campbell, Ayla's father.

"I never prayed on it, because [in a way] I didn't want it to happen,” said Campbell.  “I didn't want someone to have to go through what I might have to go through."

L’Ecuyer says as a medical professional, especially one that knows the lives that organ donation saves, the difficulty in discussing the process is outweighed by the new life it literally provides. “We hope that you’re never in a position that you have to consider this,” said L’Ecuyer. “But if you think about what your child might wish, then I think [that you’ll realize] kids are in general altruistic. They like to help other kids. And I think that a part of your child can live on if you encounter a disaster such as donor families do.”

Still, even today, five weeks after Ayla’s surgery, Campbell struggles to reconcile his potential joy with another family’s tragedy. “It’s a terrible thing to think about,” Campbell said. “And it’s something that you don’t even want to pray about because you’re basically praying for someone to lose their child so yours has a chance.”

Ayla has at least a few more weeks before she can go home, and resume a life filled with Barney, bubbles and Princesses. Her mom is eager for her to do so, in part because she is 36 weeks pregnant with her third child, a boy to be named Jacob.  “I don’t want Ayla to be in the PICU and Jacob to be in the NICU, if he comes early, at the same time,” Catherine Campbell said.

Ayla

Ayla

Last week Campbell went back to work.  As for a future, when the daily trauma of Ayla’s heart condition could be long past, her dad doesn’t allow himself to think of that day.  "We call her our warrior princess, because that's what she is,” Campbell said.  “She's a fighter and everything she's going through, she doesn't let it slow her down.  She's always been joking, happy, go-lucky."

As for contact with Ayla's donor family, it's up to that family to make contact after one year. Separately, Mike and Catherine Campbell, as the recipient family, may write a letter after one year.

About 100 children die each year in the U-S while waiting for a transplant.

If you would like to help the Campbells pay for all the bills incurred during Ayla's care, you can click here.

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