Understanding Unique Challenges in Pediatric Organ Transplants

Organ Transplants Throughout a Patient’s Lifetime

Depending on the organ a patient needs, their health, and other factors, many pediatric patients may need more than one transplant in their lifetime.

Sandra Amaral, MD, Medical Director of the Kidney Transplant program at the Children’s Hospital of Philadelphia (CHOP), explained that a transplanted kidney might last 20 or 30 years. According to an article in Pediatric Clinics of North America, the half-life of a kidney transplant is only 12–15 years; however, a patient who needs and gets a transplant when they are young will inevitably need another kidney to live for a reasonable span of time.

“For adults, many times when physicians assess an organ offer, for example, they're just thinking, ‘How can I get this person off dialysis? The waiting times are very long, and how can I help this patient survive and improve their quality of life?’” explained Amaral. “We want pediatric patients to get the most bang for their buck with the first one, and we want them to need fewer transplants over their lifetime. Things like immunologic matching and the quality of the organ are essential. So, we tend to be more selective.”

Selective Matching

While the organ matching process is already very selective to minimize the risk of rejection, Amaral explained that providers focused on pediatric transplantation may be even more selective. She notes that it reduces the likelihood of rejection which is great for patients in adolescence who may have difficulty adhering to a medication regimen.

When physicians get information on immunologic matches from the deceased donor organ allocation system, they can restrict matches and say they need a certain number of immunologic points to match for a patient to have a successful transplant. While this may benefit some patients, Amaral and many others try to prioritize living donors whenever possible.

Living Donation

The University of California Davis estimates that 40% of kidney transplants yearly are from a live donor. One option is to look for living donors amongst first-degree relatives, which could mean parents or siblings. Often biological siblings from the same parents are the best match; however, there are various ethical and physiological concerns in sibling donations. If a first-degree relative doesn’t work out, patients may try reaching out to extended families, community members, and other live donors.

“Sometimes, it is still a challenge. We are selective. Things like blood transfusions can cause someone to be exposed to someone else's blood and not be compatible with certain donors. So, we try to minimize blood transfusions in children,” expanded Amaral. “We generally try to optimize the immunologic matching and prioritize living donation.”

While searching for a living donor, a physician may list a patient on the deceased donor list as inactive. Essentially, this holds the patient’s place in line if they eventually need to be listed. However, Amaral notes that they try not to actively list or accept offers for patients with a living donor so they don’t take away from other recipients without options.

The Transplant List

A common misconception is that children are always the first on the transplant list; however, Amaral explains that the complexities and ethics of the organ transplant list are complicated. While children who need an organ rank higher than some adults, those in need of a multi-organ transplant will rank higher than those kids, even if they are older. This means some younger, healthier organs are allocated to other patients.

“If they need more than one organ, that's considered a greater need,” she emphasized. Other patients ahead of pediatric patients are those with a robust immune response that may make finding a match more difficult and prior living donors who need a transplant. Essentially, while kids are relatively high on the organ transplant list, they are not necessarily the first in line.

“Since we're so selective, if some of those younger donors get diverted to these other groups who are perceived as being in equal need or urgency, that will impact the wait times for children and our opportunities,” added Amaral.

Growth and Lifestyle Concerns

The next major challenge that Amaral describes is lifestyle, growth, and development changes in pediatric patients. She explains that the difference between a few years is minor for adult transplant recipients. For example, between 30 and 40, a patient may mature, change jobs, or have a different family life, but for the most part, they remain developmentally the same. On the flip side, the difference between 2 and 12 or from 12 to 22 is more significant.

For patients awaiting a kidney transplant, Amaral notes, “the child is waiting on dialysis, which impacts their quality of life, their ability to attend school, their growth, and development. Children with advanced kidney disease must be on special restrictive diets, so they often don't grow. It affects their height potential.”

Dialysis alone can increase the risk of other conditions, such as heart disease. Additionally, it contributes to a reduced lifespan and poor neurocognitive and social development. It is to minimize the time spent on dialysis as much as possible. These changes in growth and lifestyle add an extra layer of urgency for pediatric patients, complicated further by their need for a good match.

Assent and Consent

Transplantation is a rigorous and grueling process that requires mental health evaluations, consent, and extensive assessments. Generally, adult patients can provide consent and assent as they understand what is happening. However, in pediatric settings, a patient’s understanding of the procedure may be more complicated, requiring different approaches to patient assessment.

“Pediatric programs generally have a pediatric psychologist and social worker on their team. And in general, most pediatric philosophy or practice suggests that we should get assent for a child roughly over eight,” said Amaral. “As long as they can have some basic understanding, our psychologists and our teams try to explain to them, in an age-appropriate manner, what would happen and what's going to happen.”

Additionally, for older patients, who may better understand the transplant process, there may be complications between what they want and what their parent or guardian wants.

“We would not transplant a child who was refusing a transplant if it was an older adolescent that we felt could have that decision-making ability,” she continued. “But we also wouldn't want to disadvantage them. So, we would encourage them to at least be listed inactively so they could accrue waiting time. And if they changed their mind, they're not at the back of the line again.”

Post-Transplant Care

In addition to issues of consent and assent, physicians who work with pediatric transplant patients must also consider medication adherence more heavily. Younger patients rely predominantly on parents to ensure their child adheres to medication.

“Sometimes parents cannot do that, and we try, in advance, to assess that. We have a transplant pharmacist as part of our team as well, who tries to assess with families what their health literacy is,” explained Amaral. “There are language barriers. So, we try to be creative with ways to support them in advance. We might have to supply their medication list with pictures instead of English or print out instructions in their language.”

In cases where the providers doubt that parents can help the patient adhere to medications, they may suggest home support alternatives, such as home nursing. In very rare cases, the Department of Child and Health Services may intervene and offer additional support.

Medication adherence can be equally challenging for teenagers, depending on the family culture and expectations. According to Amaral, some parents can be very involved in their child’s healthcare. Conversely, other parents may expect their child to manage their medications themselves.

“Often, because pediatric kidney disease is rare, those patients are already in our center, and we've gotten to know them and built a relationship with their families. So we can identify some problems ahead of time,” said Amaral.

Overall, pediatric transplants can be complex procedures involving multiple healthcare team members; however, with adequate preparation and understanding in advance, these procedures can be lifesaving.