Pediatric transplant survivors are at risk of developing the same long-term side effects as adult survivors. But unlike adults, children's bodies are still developing and they may face additional challenges.
Growth Problems after Transplant
Eighty percent of children who undergo a transplant achieve a normal height, but they may be at the low end of the normal range.
Some children experience slow or stunted growth after transplant. The problem occurs most often in children who received total body irradiation (TBI) prior to transplant.
- If your child was age 10 or less at the time of transplant, growth hormone replacement therapy may help spur growth.
- Growth hormone therapy does not typically improve height in children who were older than 10 at the time of transplant.
A thyroid hormone deficiency can also affect your child's growth. Thyroid hormone deficiencies usually do not show up until two or more years after transplant. Your child should be tested regularly to ensure that this is not an issue.
Puberty and Fertility after Transplant
Most girls who are transplanted during or after puberty experience ovarian failure or premature menopause, and will be infertile. Ovarian failure reduces the level of estrogen in women which can lead to:
- reduced bone density
- bone fractures
- lipid disorders
- coronary artery disease
Estrogen replacement therapy can reduce the risk of bone and heart disease, but must be weighed against the increased risk of breast and endometrial cancer. Bisphosphonates may also reduce the risk of low bone density and fractures.
If your child retains her fertility after transplant, she may have a higher than normal risk of problems during pregnancy including:
- premature delivery
- cesarean section delivery
- an infant with a low birth weight.
However, infants born to women who had a transplant as a child, are as healthy as those born to women who did not undergo a transplant.
Boys who are transplanted before puberty typically maintain normal testosterone levels. However most boys, regardless of age, will be infertile. If your child retains his fertility after transplant, his offspring will not have a higher risk of health problems than the general population.
Heart Problems after Transplant
Some chemotherapy drugs used prior to transplant, such as doxorubicin, daunorubicin and mitoxanthrone, can damage heart muscle cells. Total body irradiation can also increase the risk of heart problems later on.
Although there may be no symptoms of a heart problem for several years, your child should have an echocardiogram every one to five years to monitor for heart problems.
Breathing Problems after Transplant
Some children will be a risk for developing breathing problems after transplant. These include children who:
- were treated with bleomycin, lomustine, carmustine, busulfan and/or cyclophosphamide (cytoxan)
- had total body irradiation
- developed graft-versus-host disease
The usual symptoms are shortness of breath and a dry cough, although some children with lung problems may have no symptoms in the early stages.. Pulmonary function tests can help determine if, and the extent to which, your child's lung function is impaired.
Dental Problems after Transplant
The high dose chemotherapy and/or total body irradiation your child received prior to transplant can damage developing teeth. Good mouth care that includes flossing, brushing with a soft tooth brush and visits to a dentist twice a year to monitor tooth development are recommended.
Learning Issues after Transplant
Many children who have had a transplant excel in school with no problems. However, some children experience learning difficulties after transplant and will need special accommodations in school. Children who undergo total body irradiation are at greatest risk of developing learning problems, but chemotherapy can affect learning skills as well.
Learning problems are more common among children transplanted at an early age. They may include:
- difficulty remembering things
- poor eye-hand coordination
- problem solving difficulties
- attention deficit disorder
Neuropsychological tests can help determine if a learning disability exists and the type of school accommodation a child needs. Similar tests help teens and young adults identify types of work that match their learning and performance skills.
By law, schools are required to develop special education plans for children with learning disabilities. Your child's transplant center can help you discuss these issues with your child's teachers and create an education work plan appropriate for your child.
Watch a video about learning and attention problems that sometimes arise in children after transplant.
Long-Term Follow Up Guidelines
The Children's Oncology Group has created long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers.
The guidelines are appropriate for children who had a diagnosis other than cancer who underwent a transplant as well.
Watch a video about long-term complications following a pediatric transplant.
Transitioning Children to Adult Care after Transplant
As your child becomes older and more independent, be sure your child begins to take an active role in his or her healthcare. Young adults often do not realize the importance of knowing their full medical history and how it might impact their long-term health. In fact, if they received their transplant as a young child, they may not remember the procedure at all.
Encourage your child to take the initiative in contacting and working with healthcare providers. Teach them to
- schedule and keep appointments
- take the lead in contacting the healthcare team promptly if health issues arise
You can begin the transition gradually when the child is a teen, so that he or she is comfortable managing healthcare needs long-term.
Be sure your child has access to an individualized survivorship care plan that he or she can share with all future healthcare providers.