By: Benson Hsu, MD, MBA, FAAP
Right now, more than 1,800 children across the country are waiting to receive a healthy organ that may save their lives. Ranging in age from newborns to teens, many of these kids will have the chance to grow into adulthood, thanks to donors who generously gave an organ or tissues for transplant.
The American Academy of Pediatrics (AAP) recognizes that children of all ages may be affected by these gifts of life. Our policy statement outlines how pediatricians and other health care providers can help children and families navigate the many issues that donors and recipients face.
Why would a child need an organ transplant?
Children waiting for transplants are facing end-stage organ disease of the heart, lungs, liver, kidneys, pancreas or bowel. Others are waiting for a cornea that could restore their sight or tissues such as heart valves that can replace parts of their bodies no longer functioning.
How long do kids on the national transplant list have to wait?
Children and teens on the national organ transplant list may stay there for weeks, months or even years. While they await a match, young patients may live full-time in the hospital or drop in several times a week for intensive treatment. Many can't attend school in person, play freely or take part in the everyday activities that healthy children enjoy.
Since there are always more children and teens on the waiting list than there are organs, nearly 50% of all kids will stay on the list for a full year or longer. Some unfortunately die waiting for a life-saving organ transplant. Children under 1 year old face the highest death rate waiting for an organ transplant.
Who can donate an organ to a child?
Adolescents and children may receive organs (or portions of organs) from adults whose tissues are a good match. Living donors—including family members or friends—can often provide a kidney or section of lung or liver for a younger recipient. Viable organs from deceased adults may also be a good match.
Infants and young children can be too small to receive adult-sized organs. They must wait for donations from children closer to their age and body size. This means relying on families of terminally ill or injured children who are willing to donate their organs after death.
For these families, the decision to donate can be difficult. Medical, ethical and spiritual questions may feel weighty and complex, especially when a family is struggling with the realization that their beloved child will not survive long.
For some, knowing their child's organs will give other kids the chance to grow and thrive can provide comfort. Many are glad to know that a single donor can help up to 8 others who are waiting for transplants.
How do families make decisions about organ donation?
Every family's situation is unique. Some may grapple with cultural or religious values, practices or beliefs surrounding the body and death. Many turn to medical providers for insights that will help them decide whether to donate their child's organs and tissues once the medical threshold for brain or circulatory death is reached.
Depending on their age, health and other factors, older children may take part in family conversations about organ donation. Some teens may already have registered to donate through their state's process for driver education and licensing. However, donors under 18 must have a parent or guardian's permission to donate. Conversations about donations may also come up during well-child visits with their doctors.
The role of the medical team is to support the family's decision-making process without bias or judgment. Often, families would need support from more than just providers. Including other supports such as social work, child life, mental health providers, among others, are also important in caring for the patient and family. Providing compassionate and effective care at the end of a child's life remains the number one goal of pediatricians and care teams.
What kind of care do kids need after an organ transplant?
Similar to the donation process, post-transplantation care requires a village to be successful. After an organ transplant, your child will need coordinated care and support from their primary care doctor plus a wide range of medical specialists. Mental health and child life providers may be part of the team, along with financial specialists who can help families navigate the cost of a transplant. Every child's situation is unique; follow-up and long-term care may vary depending on the specific organ transplant and your child's overall health.
After receiving an organ transplant, your child will need to take medications as prescribed to prevent their body from rejecting the new organ. Regular lab tests and hospital visits will help doctors monitor their progress, check for any signs of complications, and adjust medication dosages if needed. It will be important for your child to stay up to date with vaccinations since some medications may weaken their immune system.
AAP's organ transplant and donation recommendations
The AAP urges all pediatric health professionals to learn as much as possible about transplant medicine and the ethics and procedures that support organ donation. Here are highlights from our new policy that may be helpful to parents and families.
Adolescents and older children should be part of discussions about organ donation and transplantation if their age, health and level of development allows.
Kids with intellectual or developmental disabilities are considered
eligible to receive an organ transplant. They cannot be excluded solely based on their disability status.
Pediatricians and other health care professionals must work for equity in organ donation and transplantation. This means taking steps to break down barriers related to income, race, ethnicity and other social or economic factors that might keep children and families from donating or benefiting from the gift of a healthy organ.
Compassionate, effective care at the end of a child's life is crucially important. Any steps that support organ donation, or preserve organ viability and function, must be reviewed and approved by the family.
Children and families who donate or receive organs need support from a multidisciplinary team of health care providers. A clear, detailed plan should spell out the role that the child's primary care physician will play, as well as the role of all specialists who will work together for the child's well-being.
If you are the parent or guardian of a child who needs a transplant, or you are considering organ donation as a family, there's a lot to know. Your pediatrician is ready to help with answers to your questions – and guidance for the decisions you will have to make.
About Dr. Hsu
Benson Hsu, MD, MBA, FAAP, FCCM, is a pediatric critical care physician and Professor of Pediatrics at the University of South Dakota Sanford School of Medicine. He is currently the Chair of the Section on Critical Care at the American Academy of Pediatrics and also serves as a member of the Committee on Pediatric Emergency Medicine.