Generally speaking, when an organ (or tissue) in a patient’s body has ceased to function properly, either due to illness or injury, the patient may be a candidate for a transplant. A team of healthcare professionals specialized in transplant surgery removes the diseased or injured organ (or tissue) from the patient (recipient) and replaces it with a healthy organ (or tissue) from another person (donor). Some transplants can be performed using a living donor (kidney, partial liver, bone marrow) while other donated organs or tissues come from a deceased donor. The term pediatric transplant refers to transplants done in children.
In all transplant cases, the recipient and donor must be matched very carefully (by blood type, genetic antigen markers called HLA factors, and antibodies) in order to avoid transplant rejection. Transplant rejection occurs when the recipient’s body turns against the transplanted organ or tissue, causing it to fail. In order to ensure proper matching, as well as unbiased organ and tissue allocation, nationwide and international networks have been established. In the United States, the United Network for Organ Sharing (UNOS) and the National Marrow Donor Program (NMDP) are the two main organizations responsible for organ and tissue allocation.
The wait for a donor organ can sometimes take years. To be placed on the waiting list, a patient must be sick enough to warrant a transplant, but healthy enough to accept it and survive any transplant-related complications. Patients who receive a transplant will remain on medication for life in order to guard against transplant rejection and infectious disease.
Heart: A heart transplant involves the removal of the damaged or diseased heart and replacing it with a healthy one from a deceased donor. A heart transplant is a treatment of last resort for patients with end-stage heart failure or for babies and young children with multiple congenital heart defects that are not reparable by other means.
Liver: A liver transplant involves the removal of the damaged or diseased liver and replacing it with a healthy one. Most transplant livers come from deceased donors, but a healthy person can donate a part of his or her liver for a specific patient. (This is called a living donation.) A liver transplant is a treatment of last resort for patients with severe cirrhosis (scarring of the liver) caused by a wide range of diseases or for patients who experience acute liver failure (usually from a drug overdose). In children, the most common reason for transplant is biliary atresia, a condition where the bile ducts are missing, damaged or blocked. This can lead to bile backing up into the liver, which causes cirrhosis.
Lung: A lung transplant involves the removal of one or both diseased or damaged lungs, replacing them with healthy lungs from a deceased donor. Lung transplants are a treatment of last resort for patients who are likely to die from lung disease within one to two years. In children, the most common reason for a lung transplant is to treat cystic fibrosis. Other conditions for which lung transplants may be considered are pulmonic vascular congenital heart diseases, chronic lung disease of infancy, pulmonary hypertension, pulmonary fibrosis, and heart diseases or defects that affect the lungs.
Kidney: A kidney transplant involves the placement of a healthy kidney into the patient’s body. In most cases, the diseased or damaged kidneys are not removed. Healthy kidneys primarily come from deceased donors, although living donors can donate one of their kidneys for a specific patient (usually a family member). In children, the most common reason for a kidney transplant is to correct a birth defect or to replace kidneys damaged by hereditary diseases.
Pancreas: A pancreas transplant involves the placement of a healthy pancreas from a deceased donor into a patient with a diseased or damaged pancreas. The most common reason for a pancreas transplant is to treat Type 1 Diabetes (also known as juvenile diabetes).
Bone marrow: A bone marrow transplant involves replacing damaged or destroyed bone marrow with healthy bone marrow stem cells. Bone marrow stem cells are the immature cells that develop into all the various types of blood cells. There are three types of bone marrow transplants:
- Autologous, in which the patient’s own stem cells are harvested prior to chemotherapy or radiation treatment, and then put back into the patient after completion of the chemotherapy or radiation treatment;
- Allogeneic, in which stem cells are removed from a living donor who is a match to the patient are used to replace the patient’s damaged or destroyed marrow;
- Umbilical, in which stem cells from a newborn baby’s umbilical cord are used to replace the patient’s damaged or destroyed marrow.
Conditions for which a bone marrow transplant may be recommended include leukemia, lymphoma, multiple myeloma, sickle cell anemia, thalassemia, congenital neutropenia, and certain severe immunodeficiency syndromes.
Cornea: One of the most common transplants, a corneal transplant involves the removal of the damaged or diseased cornea (clear layer at the front of the eye), and replacing it with a healthy cornea from a deceased donor. Conditions for which a corneal transplant may be recommended include vision loss caused by cloudiness of the cornea, thinning of the cornea, and scarring of the cornea from severe infections or injuries.
Tissue: Tissues such as skin, bone, and heart valves can also be transplanted from a deceased donor into a recipient. It is estimated that one donor can help more than 50 individual recipients.
Other types of transplants include partial intestinal tract transplants, and, more recently, facial transplants. A few hand and foot transplants have also been reported.
According to Donate Life America, there are currently 114,712 patients waiting for an organ transplant. Pediatric patients account for 1,737 of those currently waiting.
According to the US Department of Health and Human Services, as of May 2009, the 5 year survival rate for kidney recipients was 69.3%; heart recipients, 74.9%; liver recipients, 73.8%; and lung recipients, 54.4%.
According to Transplant Living, to date there have been:
Over 6,000 transplants performed on children less than one year of age;
Over 10,000 transplants in children ages 1-5 years old;
Over 6,000 transplants in children ages 6-10 years old; and,
More than 16,000 transplants in patients 11-17 years old.
Children are children, not tiny adults. There are physical, mental, social and developmental challenges to consider when a child is a candidate for a transplant. For these reasons and others, many hospitals have a dedicated team of specialists who are extensively trained in pediatric transplantation. These specialists not only include the doctors and nurses who perform the procedures and care for the patient’s medical needs, but clinical psychologists, social workers and child-life specialists.
Receiving a transplant can take years. It is a long, intense process that will affect the entire family. It is important for each family member to understand the process (as well as they can dependent upon his or her age) and to feel supported. Children will have questions about the procedures and the hospitalization, and will need to have not only their medical questions addressed, but their developmental and social needs considered, as well. Teenagers, in particular, may have issues with self-esteem and worry about changes in peer relationships. Often, children and teens feel “left behind” by their peers and will need help finding ways to stay connected to their friends, school, and other interests while in the transplant process.
If your child will be receiving an organ transplant, please visit the Pediatric section of the Transplant Living website (operated by UNOS). Children’s needs are addressed by age level, with guides on how to help children cope with anxiety surrounding their transplant, as well as how to help them adjust post-transplant. It also provides links to camps (by state) for children with special medical needs.
If your child will be receiving a bone marrow transplant, please visit the Pediatric section of the National Marrow Donor Program (NMDP) website. The information found here runs the gamut from pre- to post-transplant and beyond, specifically geared towards pediatric and teenage patients and their families. There a multitude of resources to be found on this site.
Related Resource Pages on Band Back Together
Children’s Organ Transplant Association (COTA) provides family support and fundraising assistance to children and young adults in need of a life-saving transplant.
American Organ Transplant Association (AOTA) assists patients with free transportation to and from transplant centers, as well as providing resources regarding transplantation to patients and caregivers.
For bone marrow recipients, the NMDP provides a searchable directory for patient support groups and resources here.
Ronald McDonald House Charities is an organization dedicated to helping families and ill children. RMDC has established many lodging locations that allow parents to stay near their children who may be hospitalized for extended periods of time away from their home town.
Educational Resources and Fact Sheets:
Transplant Living provides educational resources and information for patients and families at all stages of the transplant process (operated by UNOS). As stated above, this website has an extensive pediatric section.
National Marrow Donor Program (NMDP) maintains the United States bone marrow donor registry and provides information for patients, caregivers, healthcare professionals and donors. The site also provides a list of transplant centers in the US organized by state. As stated above, the NMDP also has a comprehensive pediatric section of its website.
United Network for Organ Sharing (UNOS) manages the United States’ organ transplant system, including the database for transplants nationwide, and provides assistance to patients & families, as well as educating transplant professionals and increasing public awareness of organ donation.
American Society for Transplantation (AST) is an international organization of transplant professionals whose mission is to advance the field of transplantation and improve patient care. This website has several excellent patient education brochures that cover all aspects of transplantation, including what to expect before, during, and after a transplant.
The Gift of a Lifetime: Organ & Tissue Transplantation in America provides an overview of organ donation and the transplant process
The David Foster Foundation provides financial assistance for non-medical expenses to families of children undergoing transplants in Canada. The organization also works to increase public awareness of organ donation and provides a place for people who wish to be donors to register online.
SickKids Transplant Centre is located within the Sick Kids Hospital in Toronto and runs a research-intensive pediatric transplant program and center dedicated to comprehensive transplant care in Canada.
Cystic Fibrosis Canada provides information for CF patients waiting for a lung transplant, with links to to CF clinics by province in Canada, as well as information regarding financial resources.
Multi-Organ Transplant Program at London Health Sciences Centre (LHSC), is located in London, Ontario, and is one of the leading transplant centres in Canada. The website provides transplant-specific information to patients and caregivers, as well information regarding the donation and transplantation process in Canada.
Transplant Manitoba provides information regarding several transplant programs at the Winnipeg Health Sciences Centre (adult kidney, adult heart, liver, lung, and pediatric kidney), as well as information regarding organ donation in Manitoba.
International Pediatric Transplant Association (IPTA) is an international organization for healthcare professionals specializing in pediatric transplants. Although the majority of this website is open to members only, it does provide links to transplant and organ donation organizations worldwide.
Eurotransplant International Foundation is an international collaborative organization of transplant hospitals, tissue-typing laboratories and organ donation hospitals in Austria, Belgium, Croatia, Germany, Luxembourg, the Netherlands and Slovenia.
Transplant Recipients International Organization (TRIO) is a non-profit organization dedicated to improving the quality of life of transplant patients and their families, as well as the families of organ and tissue donors.