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Transplants Adult to Child

Monday August 14, 2006
Carly Bhave, RN, BSN, MS, CPNP, pediatric transplant 
coordinator at The Johns Hopkins Hospital, shows how a portion of a living adult donor's liver was successfully transplanted almost seven years ago when this patient was just an infant. Photo by Keith Weller.
Carly Bhave, RN, BSN, MS, CPNP, pediatric transplant coordinator at The Johns Hopkins Hospital, shows how a portion of a living adult donor's liver was successfully transplanted almost seven years ago when this patient was just an infant. Photo by Keith Weller.
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Unfortunately, there are many children who will spend summer vacation on an organ transplant waiting list instead of at camp, the pool, or on that family car trip. Just in Washington, D.C., Maryland, and Virginia, there are 114 children on the waiting list, according to April 19, 2006, data from the Organ Procurement and Transplantation Network.
Not only do children with end-stage organ disease have a diminished quality of life that precludes them from participating in normal childhood activities, they also face serious long-term effects, such as growth deficit, multiple organ failure, and neurologic complications.
Professionals working in pediatric organ procurement and transplantation say there is a huge need for awareness among the public about the demand for more transplantable organs for pediatric patients. The good news is that adult organs can frequently be used to save the lives of children, but many adults are unaware that becoming an organ donor could save as many as seven people, including infants and children.
"Adults can donate to children," says Carly Bhave, RN, BSN, MS, CPNP, pediatric transplant coordinator at The Johns Hopkins Hospital in Baltimore, Md.
"It's important to know that although it's more difficult to get organs for children, often because of size matching, adult organs can be used in many cases. One adult liver can save two children."
For example, surgical transplant teams are able to successfully use a split liver technique for children and infants. This involves transplanting the right segment into a child and the left lateral segment into an infant.
"The recipient of an adult liver can be of any age," says Mary Kay Alford, RN, MSN, CPNP, the pediatric liver center program coordinator. "However, donors should not be more than 10 times the size of the patient. That can be hard to find."
Liver transplantation is the second most common pediatric transplant procedure performed at The Johns Hopkins Comprehensive Transplant Center. The most common indication for liver transplantation in children is chronic liver failure secondary to cholestatic liver disease.
The No.1 pediatric organ demand is for kidneys, and many adults may not realize that becoming an organ donor could save a child with end-stage kidney disease. It is a common belief that kidneys donated by living family members have a significantly lower chance of rejection than those from unrelated persons. However, recent improvements in immunosuppressant drugs have dramatically raised the success rates of organ transplantation from unrelated adult cadaveric donors as well. For example, Johns Hopkins has successfully transplanted an adult cadaveric kidney to a 4-year-old child.
"Children can also often develop a better tolerance for transplanted organs than adults," says Bhave.
Infants and children also need lung transplants due to cystic fibrosis or damage resulting from chemotherapy, severe prematurity, and multiple respiratory syncytial virus infections. It is possible to use the lower lobe of a lung from an adult donor and transplant it into a child.
Many adults would be shocked to learn even an adult-sized heart can be used to save a child. Adult hearts can be successfully transplanted into teens who are nearly adult size. In addition, progress in the development of cardiac medications and treatment modalities has improved heart function for children waiting for a heart transplant.
"Size matching is more of an issue with cardiac transplants," says Bhave. She adds that palliative cardiac care has progressed to the point that it is possible for children with heart failure to live longer and grow to near-adult size, becoming eligible for an adult heart transplant.
Nipping rejection and infection
in the bud
The biggest complications after organ transplantation are infection and rejection. Because organ rejection is the most serious complication following transplant, patient compliance with an antirejection medication regimen is critical. In addition, because the symptoms of infection can resemble those of organ rejection, it's vital for parents to stay on top of their children's health and quickly follow up with their providers if there are any concerns.
Compliance with the intense posttransplant regimen also includes frequent evaluations and blood draws and possible exercise stress testing, pulmonary function tests, and bronchoscopies.
"We ask parents to do extraordinary things," says Bhave. "Most children go home with 10 to 12 medications to take twice daily, although most get weaned down to one or two after six months. Life gets better, but it's a hard road and a lifestyle change for the entire family."
Children's and Georgetown
team up for kids
Georgetown University Medical Center in Washington, D.C., is one of only a handful of Medicare-approved centers nationwide to offer pediatric intestinal transplantation. Once considered experimental, intestinal transplantation has become an important surgical therapy for children.
"People, even health care professionals, are often unaware that small intestines are being transplanted," says Amy Conlon, RN, BSN, immediate past pediatric liver and small bowel coordinator at Georgetown.
Many potential adult organ donors are unaware it is possible for children, even infants, to receive a portion of an adult intestine. New research is also being done on the transplantation of a small portion of a living adult intestine to a child.
To help patients and families through the long and hard journey of waiting for donors and undergoing surgery and the recovery period, Georgetown has teamed up with Children's National Medical Center in Washington, D.C., to provide seamless care throughout the process.
Patricia Zavosky, RN, BSN, CCRN, a clinical transplant coordinator at Children's, works closely with patients, families, and the Center for Intestinal Care and Transplant at Georgetown. Her job is to coordinate the surgical and initial recovery components of the program at Georgetown and the pretransplant and follow-up care offered at Children's.
"The program was begun to offer complete services in a local setting close to home to families in dire need without uprooting them," says Zavosky.
Zavosky stresses there is more need for pediatric intestinal transplants than many realize - especially for babies. "Many are infants who are born prematurely and subsequently develop necrotizing enterocolitis and lose a portion, sometimes a very large portion, of the intestinal tract," she says.
Another condition that occurs in infancy that may necessitate an intestinal transplant is a pseudo-obstruction, a nonmechanical obstruction of the intestines. Present at birth, pseudo-obstruction results in the inability to pass food through the intestines. "It resembles a true obstruction, but no blockage exists," says Zavosky.
These infants experience vomiting, diarrhea, and weight loss and frequently can only survive with total parental nutrition (TPN). "Any baby with any type of intestinal failure is almost always TPN-dependent, and the problem with long-term TPN is they can subsequently develop liver compromise and failure," says Zavosky. Unfortunately, it is not uncommon for these babies to require a liver transplant as well. "The wait on the list [for a bowel transplant] is estimated to be at least six months to a year, which is long enough to get liver failure," says Zavosky.
Supporting these tiny fragile infants nutritionally so that they live long enough to be medically ready for such a major surgery is a huge challenge. "However, organs by far are the biggest issue," says Zavosky.
Don't keep your wishes a secret
For adults who do want to become organ donors, Zavosky stresses it is vital that they let family members know about their wishes. "Signing an organ donor card is helpful, but if you don't educate your family on your wishes, it may not be enough," she says.
Making your wishes known can mean the difference between life and death for patients and families who are living with the stresses of the catastrophic effects of organ failure. Despite the toll it takes, hope remains for most. "A lot of our pediatric patients have great attitudes and amazing spirits that make you feel uplifted," says Conlon.
However, if a child waits too long on a list, there is a chance that a child's condition can deteriorate to the point where the family may decide to refuse an organ or withdraw the child from the waiting list altogether. Conlon says that can be because the patient and family have accepted the quality of life as it stands at that point or because they do not want any more invasive procedures.
"Organ donation awareness and promotion is one of our biggest issues," she says. "Part of the reason children are dying on waiting lists is because people are just not aware."