In children, organ transplants usually happen because of a congenital defect—a bad kidney, liver, lung or heart that a child just happens to be born with. Even though organ transplantation tends to come after months or even years of treatment, it’s still the very last thing parents want to happen.
But after the shock and heartbreak passes, education is crucial, said Dr. Luis Ortiz, section chief of pediatric nephrology at the Children’s Hospital of Georgia, which offers one of only two pediatric organ transplantation programs in the state. “The entire family has to understand what the patient is going to require in terms of care, limitations and support,” he said.
The Top Two Questions
When parents first hear the news that their child needs a new kidney, Ortiz says, their first question inevitably is, “Can I be a donor?”
The answer is “Maybe.” Despite differences in size, adults can donate organs to children, and except for the heart, parents could potentially donate a kidney, part of a liver or part of a lung to a child.
But these “living donors” have to be screened very carefully to make sure that they are healthy enough to donate. This is not just to make sure that the organ itself is healthy, but also that the donor can live a healthy life without the organ. “There are some factors, like hypertension, obesity, smoking or other medical conditions. If you have these, you can’t be a candidate to donate,” said Ortiz.
If parents aren’t candidates, it’s common to turn to other willing family members to see if they might be a good fit, including siblings. In any case, a psychiatric screening is also part of the exam to make sure that any donor—but in particular minors—fully understand the risks.
If a living donor can’t be found, then children go on the national organ transplant waiting list—which is managed by the United Network for Organ Sharing, or UNOS—to wait for a matching organ available from either an adult or child who has died and whose organs are donated.
Then comes the second most common question: “Will my child be able to use this new organ for the rest of his or her life?”
In terms of kidneys, unfortunately, the answer is no, although children with donor kidneys can often go 15 to 20 years before needing another transplant. For other organs, the answer focuses on survival rates, which tend to be very good. Nearly 80 percent of children with new livers now survive 20 years or more after surgery. Heart transplants, too, have now become so accepted that children with these new organs survive for 20 years or more. For children who need lung transplants—a very serious condition—the five-year survival rate is 50 percent.
True or False?
Asking lots of questions—and getting answers from a reputable source like your doctor or recommended websites—is important because people still have a lot of misconceptions when it comes to organ transplants.
Misconception No. 1: A very young child can’t get a transplant.
Truth: For kidneys, minimum requirements usually are for the child to be at least 3 years old and at least 12 kilograms, or 26.5 pounds. But Ortiz has performed a kidney transplant on a child weighing as little as 20 pounds. “If there are multiple potential complications, we may consider a kidney transplant even in these smaller children,” he said.
Misconception No. 2: You have to wait years if you’re on a donor waiting list.
Truth: While that might be possible for certain organs, some donors get matched the first day. According to the UNOS website, “Factors affecting how long you wait include how well you match with the donor, how sick you are, and how many donors are available in your local area compared to the number of patients waiting.” Organs are matched 24/7, so families have to be prepared to get to the hospital immediately once they receive a call about a potential matching organ. Then more blood work has to happen to make sure the organ is a perfect fit. This is why three families are contacted for each organ, so there are backups in case the first family is not a match.
Misconception No. 3: The transplant is the hardest part.
Truth: After the transplant, the real work begins. Children will have to take several medications, every day, for the rest of their lives to make sure their bodies don’t reject the new organ. This can be tough, especially for teens, to stick to. So families have to be diligent.
Right after the transplant, there are about four months of recovery at home, but once children are ready to return to school and regular life, families still have to be very careful about exposure to viruses and other illnesses. That’s because the anti-rejection drugs suppress the immune system, so children might become very sick, even if they get just the common cold. In addition, one virus, Epstein-Barr Virus or EBV, can cause lymphoma, a kind of blood cancer, in children or teens who have received a new organ.
Organ transplant patients will also need to see their doctor once a month for blood work to make sure the organ is working properly.
Kidney transplant patients in particular need to make sure to drink plenty of water to help keep their new kidney working well. And it goes without saying that alcohol, drug use or smoking are no-nos. Not only are they illegal for minors, but these habits can make blood vessels narrower, increasing the blood pressure, which is dangerous for transplanted organs.
While it’s true that life changes after an organ transplant, Ortiz—who has worked with families in need of new organs for nearly 20 years—has seen many families do very well. “It’s a complex situation that includes many health care professionals and services, along with family support. It’s not easy, but it’s very, very possible,” he said. “It comes back again to education.”