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A heart-rending time
Luke Sulley is two years old. With his bright red hair and abundant energy, he seems like a typical toddler. However, a closer look shows that Luke drags behind him a bag that is connected to his body by long tubes. “He takes six different oral medications and an intravenous medication to keep his heart functioning,” said his mother, Jamie Sulley.
Jamie and Luke Sulley have been living at Ronald McDonald House near St. Louis Children’s Hospital since August 2007. They are waiting for a new heart for Luke. The Sulleys live in the town of Missouri Valley, Iowa, which is some 30 miles from Omaha, Neb. During Jamie’s pregnancy with Luke, she had a routine ultrasound that revealed that Luke had a heart problem. He was diagnosed with a rare condition known as hypoplastic left heart syndrome. In effect, Jamie said, “Luke was born with half a heart.”
Jamie had plenty of time to educate herself about Luke’s condition. After Luke was born, he had surgery in Boston. Although a heart transplant had been discussed, Jamie and her husband Troy opted for a promising treatment of three surgeries that could be performed in Omaha. During the second surgery, Luke’s lungs collapsed and his condition became critical. He was flown to St. Louis Children’s Hospital, where he was stabilized. It was determined that Luke’s only chance of long-term survival was through a heart transplant.
The family has been waiting since August.
Luke’s heart will come from a deceased person. The transplant must take place within four hours of the death of the donor, which means Luke needs to be near Children’s Hospital. Since Luke cannot risk infection, he and Jamie have been living in one of the Ronald McDonald House private apartments. Jamie admits, “We don’t get out much.”
The Sulleys have three other children: Jessica, age 11, Emily, 7, and Zackary, 4. Prior to coming to St. Louis, Jamie home-schooled the three older children in order to minimize the chances they might bring home colds and flu from school. Their lives changed again in August when Jamie and Luke had to move to St. Louis quickly. Jamie had only two days to enroll the older children in school and make arrangements to move. Troy has only been at his current job at a car dealership for a year. He and the children remain in Iowa and visit on weekends. “They’ve enjoyed being tourists in St. Louis,” Jamie said.
Sulley feels that they are luckier than some. Troy’s employer has been generous about allowing him to take time off work. Jamie credits her faith — the Sulleys are members of the Church of Latter Day Saints — and the support of the church for helping her through these past months. The bishop in Iowa arranged for Jamie to meet other Mormon families in St. Louis who have been helpful. Church and family members have also helped to care for the older children in Iowa. Insurance and community support have helped pay for transportation costs as well as the day-to-day needs of the family.
Although the Sulleys live in a sunny, spacious and nicely furnished apartment at Ronald McDonald House, it’s not home. The Sulleys were told that the wait for a donated heart would be eight to ten weeks, but it has been more than 20. Once the transplant is performed, Jamie and Luke will spend another four to six weeks in St. Louis before returning home.
St. Louis Children’s Hospital is a leader in performing organ transplants in children. Its lung transplant program is the largest in the world, and patients from such far-away places as Saudi Arabia, Israel, Australia and Japan have been treated there. Once a person is identified as a candidate for an organ transplant, a team is assigned to help deal with the various aspects of the process. There are psychological factors to manage, as well as the coordination of financial resources.
Donna Oberkfell, a nurse who works to coordinate care with transplant patients at St. Louis Children’s Hospital, stressed that the most important thing people can do with respect to organ donation is to make their wishes known to their families. Indicating a willingness to donate via a designation on a driver’s license or enrolling with a state registry is often not enough, as a person’s family can overturn that decision upon the person’s death. Oberkfell said that if potential donors take the time to make their wishes known, it is easier for their loved ones to approve organ donation when confronted with that decision.
Meanwhile, Jamie and Luke Sulley continue to wait for the donation of a heart. Jamie teared up as she said, “I will be forever grateful to the family who will give my son the opportunity to live. I hope that our story will inspire others to give the same gift to other families.”
The bigger picture
More than 97,000 people in the United States are on the waiting list for organ donations. Many will die before a donor organ is available.
“If everyone who was eligible to do so donated their organs, we could significantly decrease the amount of patients waiting for a transplant,” said Sharon Moorhead, manager of transplant services at St. Louis Children’s Hospital.
The good news is that organ donations have increased in recent years. As old myths have been dispelled — such as a fear that a person who is a donor will receive inferior medical care in a quest to obtain a coveted organ — and the public becomes aware of the need for donor organs, the number of donations has risen.
Mid-America Transplant Services, which is currently based in Olivette and is planning to move to the Highlands complex south of Forest Park to be closer to be hospitals that carry out transplants, reported a record year for donations in 2007.
However, as the success rate of transplantation increases, so does the need for donated organs. Nearly 500 transplants were performed in the St. Louis region in 2007, but 1,500 people remain on the waiting list.
“The average wait for a person in need of a kidney is five years,” said Kathy Holleman, a spokeswoman for Barnes-Jewish Hospital. While awaiting for a new kidney, a patient is often on dialysis. “Sometimes a person on dialysis doesn’t have five years to wait,” Holleman added.
Patients in need of kidney transplants can receive kidneys from living donors. Living donors are preferable because their organs tend to be healthier than those of deceased persons. Various compatibility factors are assessed, and often a family member is the most suitable and most willing donor of a kidney.
Barnes-Jewish Hospital is now collaborating in a “matched-paired transplant” program with Johns Hopkins University in Baltimore, Md. This program facilitates scenarios such as the following: There is a couple in St. Louis, one of whom needs a kidney transplant, and a couple in Baltimore with one person having the same need. In each case, the partner of the person needing the donation is not a compatible donor. However, the partner in St. Louis might be a compatible donor to the person in Baltimore and vice-versa. Once “the match” is determined, surgery is performed in both St. Louis and Baltimore to remove the donated kidneys; the organs are flown to the receiving hospitals where they are then transplanted. “We hope that this program will become a national model,” Holleman said.
Nearly 45 percent of kidney transplants come from living donors. A heart, obviously, must come from a deceased donor, while other organs, such as lungs and livers, can come from living donors in the form of partial organ donations. These parts, known as lobes, can be removed from a healthy person and transplanted to a person in need. In fact, the liver stands out as an impressive organ in that it can regenerate itself. For a liver transplant in a child, 40 percent of a healthy person’s organ can be removed and transplanted, and the transplanted organ can grow to full size.
Additional information about organ and tissue donation can be obtained through Mid-America Transplant Services, a not-for-profit organization that coordinates the procurement of vital organs, tissues and eyes in the region. Donors can submit their names to the donor registry through the agency’s website, www.mts-stl.org, or by calling 991-1661.
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