Family waits in hope for donor heart
04/20/2014 4:55 PM
04/20/2014 5:05 PM
Five-year-old Natalie Davis sprints from the living room to the kitchen behind her 2-year-old sister, shyly grabbing onto her mother’s arm.
A pixie of a girl with bright blue eyes and a sprightly smile, she wants to run and play and laugh.
She used to run around the kitchen island, her father says. Round and round and round until you’d get dizzy just watching.
But even a short romp from one room to another now exhausts the elfin child, and she flops into a pint-sized recliner to catch her breath.
Though it seems impossible that it could happen to such a small child, Natalie’s heart is failing.
And only through the gift of a new one will she survive.
Natalie suffers from a disease called dilated cardiomyopathy, a condition so rare that MUSC cares for only about 100 children in the state who have it, says Dr. Andrew J. Savage IV, director of the pediatric cardiology transplant team at the Medical University of South Carolina.
It causes the heart to weaken until it can hardly pump blood at all, he says.
“At some point, it can’t squeeze much,” he says. “And even with the help of medications, it can’t provide enough blood flow that she needs to live.”
About a third of children with the condition recover, and another third maintain their function at a reduced level, he says.
The rest, like Natalie, just get worse. She’s been on the waiting list for a heart for more than two months.
“They’ve told us that she is the highest priority on the list,” her mother, Jane Davis, tells The Greenville News. “They’ve also explained that that means nothing if a heart doesn’t come along.”
But finding a heart, or any organ, for a small child is difficult because a donor needs to be someone of the same general size and age, says Mark Johnson, spokesman for LifePoint Inc., South Carolina’s organ procurement agency.
“There is a growing ... demand of children who need transplants, but there is a small supply of organs from that age group,” he says. “Thus, finding organ matches for the growing number of children on the transplant waiting list can be an increased challenge because there are so few children who die that become donors.”
So the Davises are in a holding pattern. Never too far from the phone in case the call comes about a heart.
“It’s a very tough spot because we know how sick she is,” Jane Davis says. “They did about 10 heart transplants on children last year. That was all the organs available.
“We know the chances are not very good.”
A new family
Dick and Jane Davis met in 1986. They married 10 years later.
Both were telephone company employees, says Dick, 75. He retired when he was in his 50s, but worked as a communications consultant until 2012. Jane, 60, was a business representative until her retirement in 2000.
Becoming the parents of two small, active girls wasn’t how they’d planned to spend their golden years.
Dick was looking forward to going horse backpacking, camping and maybe doing some boating. And Jane spent time with friends, was busy volunteering, and could even lounge around the house all day if she had a mind to.
“We never expected this,” she says. “Not in a million years.”
But in August 2011, the couple took in newborn Kayla. They took her sister, Natalie, too.
At first, they thought it would be temporary, that the girls would eventually go back with their mother. But time went on, and after more than a year, they began adoption proceedings. The girls became theirs on March 25, 2013.
“Our son Danny is adopted, too,” Jane says. “So we said, yes, we’d love to take them.”
And life, the Greenville couple says, has been wonderful since — a mix of Disney World trips, playground romps, bedtime stories and unconditional love.
“Our life has drastically changed, but I can’t say it’s for the worst because these kids just fill our lives full,” Jane says. “We love them and we’re very happy.”
“We like chicken nuggets and french fries now,” quips Dick.
A failing heart
But one day, Natalie began to have what they thought were signs of a nervous stomach. She vomited up her breakfast every morning and got fussy about eating. When doctor visits and tests turned up nothing abnormal even though her symptoms were escalating, she was hospitalized for additional tests, and the condition was discovered.
“She went into the hospital on Jan. 27 for tests, and they came in on the morning of the 28th and said she’s in heart failure,” Jane says. “She went straight to intensive care for a week and they flew her to MUSC that Monday.
“They started talking transplant from the get-go.”
In the weeks since, there have been several more hospitalizations. And Natalie can stay home now only with the help of a continuous intravenous medication that keeps her heart pumping. But she is easily tired and winded.
There are five other medications as well, stacked in packs on the kitchen counter, with a calendar nearby to keep track of the dosing schedule. Among them is an appetite stimulant that doctors hope will help Natalie gain some weight so she is big enough for a device that will pump for her if her own heart gives out.
“We’re trying to plan ahead if we don’t get a heart in time,” Savage says. “If something like that happens ... (we put) her on a breathing machine and ... pumps to replace the function of the heart.”
The Davises hope a heart will be available before that happens, of course. But while the shortest wait for a heart transplant was 24 hours and the longest was 13 months, the average is three to four months, Jane says. So they just hope Natalie can hold on.
Still, as much as they pray for a heart, they know that for that to happen, another child has to die.
“It’s terrible. You hear of a sick child or something, and you wonder, that one might be it,” says Jane. “We don’t want any child to die to save Natalie. But we know realistically that kids die every day from accidents or illnesses or whatever. And we just hope and pray the family will see their way to give the gift of life to Natalie.”
Until this happened, they hadn’t given much thought to childhood organ donation themselves. What parent wants to think about that?
“I would have a problem with it too. But when I think about Natalie, if something happens to her and there’s still something there available, it will be donated,” says Jane, tears filling her eyes even though she eschews crying.
“I’d rather my child be a living legacy than a memory,” she says.
Not enough donors
Natalie is one of six children in the state waiting for a heart now, Savage says.
The overall consent rate for donating organs is 73 percent nationally, including parental consent for children, says Johnson.
South Carolina’s overall consent rate was 76 percent and the parental consent rate for children was 81 percent last year, he says. That’s double what it was in 1997 before the group brought in counselors to work with families when a child dies.
But there are about 20 children currently waiting for organs in South Carolina, according to the Organ Procurement and Transplantation Network. And last year, 11 children were donors. The math makes the deficit all too clear.
While there is a lack of all donors, fewer children become donors than adults, Johnson says. So having more parents consent to donate their children’s organs would help.
“There is really not a different answer to the organ shortage problem for children than there is for adults,” he says. “It just may be a little greater.”
Along with providing grief counseling and emotional support, that need for childhood donors is one of the things Lilliana Amador, a family support counselor with Lifepoint, talks to parents about when they’ve lost a child.
“From the moment I meet that family to whether they agree to donation or not,” she says, “I’m there all the way.”
Reactions vary, she says, but most people decide that donation can be a positive act at a time of tragic loss — like the family who lost their 15-year-old son, she says.
“He gave his heart to a 10-year-old, a 17-year-old boy has his liver, and two gentlemen were able to have his kidneys,” Amador says. “And (his mother) finds peace in knowing that her son is not only her angel, he is these people’s angel too.
“At the end of the day,” she adds, “they realize this death was not in vain.”
A second chance
Approaching people who’ve just lost a loved one to donate their organs isn’t easy. But Amador says it’s a job she was born to do.
“I am the voice of all those people waiting for an organ who need somebody to give them a second chance,” she says. “It’s so wonderful when I get to meet the recipients. I think, ‘This person is alive because I helped.’
“No one likes to talk about death,” she continues. “But it’s important to be aware that it could be you.”
Dick says Natalie is aware that she could die without a new heart, and that she’s taking it surprisingly well.
But she is afraid of the dark now, Jane says. And she often talks about heaven and asks to pray.
“We went to Walmart to get her a ‘Frozen’ movie and she said, ‘I hope my heart comes tomorrow.’ And I said, ‘I hope so too.’ And she said, ‘Let’s just pray about it,’ ” Jane recalls. “So we pulled over to the side of the road and prayed about it.”
A woman of faith, Jane struggles with why this is happening.
“The good Lord can’t have brought her this far and then is going to take her away,” she says. “I have a kind of a peace about me that a heart’s going to come. And she’s going to get fixed and have a wonderful life.”
They’re also going on faith that their finances will hold up, says Dick. They have adequate insurance coverage for the $100,000 transplant, he says. But there will be a lifetime of expensive anti-rejection medications too.
“The thing we’re concerned about is ... all we’ve got is our retirement,” says Jane. “We do have a good retirement. But yet we’ve still got to raise these kids until they’re out of high school at least. And I’ll be 75 when Kayla graduates from high school. We worry the bills will eat into what we have to raise them.”
“You’ve got to go on faith a little bit that everything’s going to work out,” Dick says with calm acceptance.
That quiet resolve is how they are approaching life these days. In addition to administering all the medicines to Natalie, they’ve had to learn how to change IVs and they’re back and forth to MUSC in Charleston every two weeks, and have doctor visits in Greenville in between.
It takes everything they have to keep up with the girls — Natalie, now at home from kindergarten because of the germs, and high-spirited Kayla, racing back and forth to hop on each of their laps in turn.
“We have problems like anybody else, but you just have to get in the flow of it,” Dick says. “It really does take both of us and it really takes about 100 percent of your time. But to me it’s something that we signed up for.”
They have no special ways of coping with the stress and fear and uncertainty. But instead of going to a play one recent evening, Dick and Jane simply stayed home and popped some popcorn and watched a movie.
“We needed it,” says Jane. “We were just wore out.”
The only option
The once-animated child who loved gymnastics now spends most of her days coloring, painting, playing on her Leap pad, or watching her new favorite movie “Frozen.” And she does the school work her kindergarten teacher still sends home.
“She was pretty far ahead in learning,” Jane says. “Then everything stopped.”
Sadly, other activities, like clamoring through the playhouse the Davises built for the girls for Christmas, are limited. And Natalie must wear a mask when she’s with other children to protect against infection.
“We can’t let her do hardly anything any more,” says Jane. “She gets to gasping for breath.”
After she was diagnosed, the Davises remembered how Natalie hadn’t had the strength to ride a tricycle as a toddler. And how she’s always been small and fragile. Looking back, they say, it could have been the heart problem even then.
Transplant, says Savage, is Natalie’s only option.
But the grueling 12- to 14-hour surgery itself is a risky prospect. About 80 percent survive the first year, he says. And those who make it that far will have on average 15 years before another heart transplant is needed because the initial heart wears out.
Of those who do survive, he adds, nine in 10 go on to live normal lives, except for the more frequent doctor visits and anti-rejection drugs.
“It’s hard to believe we went to the doctor one day for a stomach upset and the next thing we know she needs a heart transplant,” says Jane, checking the ringing phone to see if it’s MUSC.
A false alarm last week had the family in the car and ready to go. But in the end, the heart wasn’t viable, Jane says.
“If she doesn’t get a heart within a reasonable amount of time, they’re not going to save her. And we know that,” she says. “But we don’t want to lose her.”
In the meantime, they just wait for the call.
“We can’t predict how often hearts will become available,” says Savage. “We’ve gone times where we go several months without a good heart available and then two weekends last year when we did two.
“It could be tonight. It could be six months from now,” he adds. “We just don’t know.”
WAITING FOR A TRANSPLANT
More than 120,000 people are on the national waiting list for organs, as of March 25, 2014.
More than 99,000, or 82 percent, are waiting for a kidney, compared to nearly 90 percent in South Carolina.
On average, 150 people are added to the waiting list every day.
And every day, 18 people die waiting for a transplant.
In South Carolina 104 people donated organs upon their deaths last year, saving more than 330 lives in South Carolina and around the nation.
Transplants saved more than 28,000 lives last year.
Source: LifePoint Inc.
Find out more about Natalie Davis at www.gofundme.com/7nwfqs.
Register to become an organ donor at www.DonateLifeSC.org.
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