The Gift of Life
“It wasn’t supposed to happen,” says Valerie Rabeler, gazing at a photo of a smiling blonde-haired toddler, a little girl who looks so full of life.
Dana Rabeler was a vibrant healthy 2-year-old in June 1990 when she suddenly became ill with what doctors thought was pneumonia. Dana was treated with antibiotics, but she never completely recovered. For several months following the onset of her illness, she was in and out of the hospital. During one of those hospital visits, physicians discovered Dana’s heart had been damaged, possibly the result of a common viral infection that traveled to her heart rather than taking the most common route to the digestive system. The official diagnosis was viral myocarditis.
In November, four months after the onset of her illness, Dana’s heart began to fail. Without a heart transplant, doctors said, she had six months to live — at best.
Tragically, the determined little girl, who had learned to “swallow pills like a pro” to stay alive, never received her transplant. Several months later, Dana’s brave heart, and the beeping, blinking machines around her, stilled. The beautiful girl who loved hats, the beach and riding on Grandpa’s boat fought valiantly, but it was not enough.
Dana’s death caused pain the Rabeler’s wouldn’t wish on anyone. “There is a wrongness about it when you lose a child,” says Dana’s mother, who has two older children. “You don’t expect to outlive your children. Once that happens, you never look at anything the same way again.”
Following her death, Dana’s family donated her corneas, restoring sight to two donors. Today, Valerie volunteers at Carolina Donor Services, North Carolina’s federally designated organ-procurement service, which operates in 79 N.C. counties and in Danville, Virginia. LifeShare, another organ-procurement agency, serves the western part of our state. Rabeler hopes that raising awareness about organ donation will save other parents the heartache she and her husband experienced.
More donors are needed.
Imagine a child in your care is having an asthma attack. You grab the child’s life-saving inhaler, but instead of giving it to the child, you toss it in the garbage. We repeat this scene many times over in this country with our inattention to organ donation.
More than 90,000 people in the U.S. are awaiting life-saving organs. Of those, more than 2,000 are under the age of 18. The parents of these children watch helplessly as they slip away, in need of a gift from a stranger who may not offer it.
In 2005, 206 children died while awaiting a transplant. Of that number, 80 were less than 1 year old.
Organs are not as available for young children, says Stuart Sweet, a pediatric pulmonologist who cares for lung transplant patients at St. Louis Children’s Hospital. For children, in particular, organ size is a factor, because adult organs are often too large to serve pediatric patients.
“My goal is to eliminate pediatric patients dying while waiting for an organ transplant,” says Sweet, who also is chairman of the Pediatric Committee for UNOS, the United Network for Organ Sharing, the national program that facilitates transplants across the country and maintains the database for all transplants performed in the U.S.
“The best thing we can do in today’s world is recognize that each of us can do our part to make sure no organ donor opportunity is missed,” Sweet adds. “If everyone would do that, whether they are a health-care provider or a citizen, then this problem would be greatly improved.”
Both Sweet and Donna Croezen, director of clinical services at Carolina Donor Services, praised the Organ Donation Breakthrough Collaborative effort of the Department of Health and Human Services, a program aimed at increasing overall donation rates in the United States. In 2004, a year after the program’s inception, there was a seven percent increase in organ donation. The Collaborative hopes to increase organ donation rates from the current national average of 46 percent of eligible organ donors who die in hospitals to a target of 75 percent.
“It is so critical for people to understand how important organ donation is and what a desperate need there is for organs,” says Croezen. “To be even a small part of passing this tremendous gift of life from one person to another, I think that’s what drives all of us,” she adds. “The families who donate are amazingly heroic to give during such a terrible time of loss.”
Children benefit from the generosity of grieving families.
It is exactly this kind of heroism that saved Kara Thio of Cary. Each year on the anniversary of her liver transplant, Kara, now 14 years old, writes a note to the family of a young boy named Evan who died in a tragic car accident. Part of his liver, selflessly donated many years ago, saved Kara’s life when she was a critically ill infant.
Kara was born with biliary atresia, an absence of the ducts that drain bile from the liver, which occurs in one out of 15,000 live births in this country. Doctors told the Thios that without a liver transplant Kara would not live to celebrate her first birthday. Luckily for Kara, she received her transplant when she was 8 months old.
In 1998, after several years of correspondence, the Thios finally met the family who gave Kara the gift of life. Although the organ donation process is anonymous, families on both sides can agree to be contacted.
“We were comfortable that we wanted to meet them, but it was really hard,” says Kara’s mother, Victoria. “Organs are something you can’t buy or make. They have to be donated. It’s really hard to know that someone had to have a loss that is of benefit to your child.” Evan’s family was on vacation in California when they were hit by a car and 18-month-old Evan was killed.
“I know that we didn’t do anything to cause their loss, but I still feel guilty that they had to have that loss,” explains Victoria.
Today, Kara attends high school, spends time with friends and plays sports. She and her family knows that none of these things would be possible without Evan’s gift. During their darkest hour, his family saw through their grief to help others.
Organ recipients face emotional and physical challenges.
Kara’s journey, like those of many transplant patients, has been challenging. Organ transplants require a great deal of emotional and physical stamina on the part of the patient and his or her family. It involves schedule juggling, courage, commitment and a vast personal and medical support network.
Only certain medical centers perform transplants, and organs are viable only a short time. An organ recipient’s family must be prepared to jump at a moment’s notice.
For Kara’s mother, the moment when there was no turning back was gut-wrenching. “I was pretty strong throughout this, but when I heard there was an organ available, I just cried because I was really scared. We were in a whole different phase,” recalls Victoria. “I didn’t realize it would hit me like that.”
Kara’s family, her mother, father and a 3-year-old, spent months commuting from coast to coast because they chose a transplant program in California.
Even after the transplant, Kara was not out of the woods. Two years later, doctors found a blockage in the portal vein, which carries blood from the digestive system to the liver. It was not possible to unblock the vein, so doctors rerouted blood flow with a shunt. It didn’t completely stop the bleeding. Fortunately, just as doctors were preparing to operate again, Kara’s body miraculously formed a new route for blood flow.
Today, Kara is doing well. “We are very thankful and grateful,” her mother says. “If you saw her you wouldn’t even know what she has gone through.”
Sharing life is the greatest gift of all.
Teresa Aston, transplant coordinator at UNC Hospitals, knows exactly what families go through from start to finish during organ transplantation. Aston is on call 24-7. She evaluates the patient and the family’s support system, and she communicates with medical teams and the organ-procurement organization before, during and after the transplant.
Hers is no small job. It can be rewarding and heart breaking. Under the best of circumstances, transplant patients need a lifetime of medical maintenance that can be cumbersome; in the worst scenarios, they suffer life-threatening rejection episodes and succumb to organ failure.
Aston calls the transplant patients she works with her “kids,” and they obviously rely on her strength, spirit and experience to help them on their journey. For years after their transplants, her kids still e-mail and call.
Not surprisingly, Aston has warm memories of many of her former patients. She recalls one 9-year-old boy who needed a heart transplant but was hesitant to talk to anyone at the hospital. During one of his visits, Aston gave him some paper to write down his thoughts. The next day he gave it back to her. On the paper he had written: “I feel pain, but it’s not heart pain.”
One of the first lessons we teach our children, when they hoard their toys and their snacks, is that sharing benefits the giver, the receiver and the community. It’s a lesson worth remembering. — CP
Become an Organ Donor
These three steps will ensure that your decision to become an organ donor is honored:
• Indicate on your driver’s license that you wish to be an organ donor.
• Make your wishes known to your family.
• Complete an organ and tissue donor form from a donor service.
Additional information about organ donation can be obtained by calling Carolina Donor Services at (800) 200-2672 or by visiting the organization’s Web site: www.carolinadonorservices.org.
Pediatric Transplant Waiting List
Organ Procurement and Transplantation Network, June 2, 2006. Data for children under the age of 18 in the U.S.