Possible Late Effects of Your Child's Transplant

Most children treated with bone marrow or cord blood transplant (also called a BMT) go on to have a good quality of life. However, some develop late effects — complications that appear months or even many years after treatment. Though some children develop serious complications, most children have few or mild late effects. You and your child can take steps to manage any possible late effects.

Causes of late effects

Late effects of transplant can begin a few months after treatment or many years later. They can result from one or more of the following: 

• The disease being treated
• Chemotherapy, radiation therapy or other treatments a child may have received before transplant
• The transplant preparative regimen of chemotherapy and sometimes radiation therapy
• The immune cells received in the transplant itself

The specific risks to your child depend on diagnosis, treatment and age when treatment was received. It is important to talk with your child's transplant doctor about possible late effects and the best long-term follow-up care for your child.

Recommended tests after transplant

Scheduled tests can help detect problems early so that they can be properly treated. For guidelines to help you and your doctor schedule your long-term follow-up care after transplant, see A Guide to Protecting Your Health after Transplant: Recommended Tests and Procedures. Download the guide from the NMDP’s research partner, the Center for International Blood and Marrow Transplant Research at www.cibmtr.org/posttransplant.

Growth problems

Doctors will check your child's height and weight regularly after transplant to see if he or she is growing as expected. If your child does not grow at a normal rate, an endocrinologist (doctor who is a hormone specialist) can assess your child. Some drugs common after transpant can affect growth. If tests show your child's body is not making enough growth hormone, growth hormone therapy may help. If your child does not have the growth spurt that comes with puberty, treatment with sex hormone replacement therapy may be an option. Doctors are still learning more about who may or may not benefit from each kind of hormone therapy. Although some children do not grow as tall as expected, most grow to within the normal adult range.

Infertility

Most people treated with a bone marrow or cord blood transplant become infertile. The treatments your child receives before transplant and your child's age at treatment affect the chances he or she will be infertile. Before transplant, talk with your child and your child's doctor about this risk. Older children who have gone through puberty may be able to take steps to provide options for having a child in the future. Before transplant, older boys may be able to have sperm frozen. Older girls may be able to have eggs frozen. However, these methods are not an option for everyone and do not always work. You can ask your child's doctor whether these or other options are available for your child.

Your child will also need to know that not everyone who has a transplant becomes infertile. Some transplant survivors have gone on to have children. When your child is ready to think about these questions, encourage him or her to talk with a doctor, either with or without you present. You can get more information from the non-profit organization Fertile Hope at www.fertilehope.org.

Sexual development

Your child should be tested for normal levels of sex hormones. Normal levels of sex hormones are needed for sexual development, such as puberty. They are also needed for overall good health.

Girls

After transplant, older girls should have yearly checkups with an endocrinologist (hormone specialist) or gynecologist. Checkups should include tests for the sex hormone estrogen. Most girls treated with transplant will not have normal levels of estrogen. If your daughter does not begin puberty by age 12 or 13, she may need estrogen therapy to enter puberty, develop sexually and grow normally. Older girls and women may need hormone replacement therapy to menstruate. Your daughter may need hormone replacement therapy through adulthood because low levels of estrogen can lead to bone problems (osteoporosis), heart problems and other health problems. As your daughter takes charge of her own health care, be sure she understands the need for regular gynecological checkups throughout her life.

Boys

Boys usually produce normal levels of the male sex hormone testosterone after transplant, unless they had extra radiation to the testes. Most young boys will have a normal puberty. However, if your son does not show the growth spurt and sexual development of puberty, he can be tested for low levels of testosterone. If needed, he can be treated with hormone replacement therapy. 

Changes in memory or learning

For many children, transplant has no effect on learning. However, some children have changes in the ways they can learn or remember information. Children who are older at transplant have a low risk of such changes. The risk may be higher for very young children. [1, 2] The risk may also be higher for children who had disease in the central nervous system or had radiation treatments. Changes in learning can appear soon after transplant, but often do not surface until years later. For example, a memory problem may not appear until a child tries to learn multiplication tables.

If your child's learning is affected, you can work with the school to meet your child's needs. Watch for drops in your child's grades or increased feelings of frustration with school. Other signs you and your child's teacher can watch for include problems with:

• Understanding what he or she reads
• Needing much more time and effort to complete work than other children do
• Math, such as remembering multiplication tables or organizing math problems
• Remembering, understanding and using information that he or she reads or sees, while having an easier time with information that is heard
• Paying attention in class
• Short-term memory
• Planning and organizing

If your child shows changes in learning ability, he or she can be assessed so you can create a plan to meet your child's needs. At your child's regular follow-up visits to the transplant center, doctors will monitor your child's development and watch for changes. See Returning to School after Transplant for more information.

Other potential late effects

Some other potential late effects of transplant include: 

• Graft-versus-host disease (GVHD).
• Thyroid problems leading to feeling very tired, weight gain, depression or other problems — Doctors will check your child's thyroid function at your child's annual follow-up visits, so problems are usually found before symptoms appear.
• Cataracts and other eye problems.
• Problems with bones, muscles or joints (musculoskeletal problems), such as osteoporosis or avascular necrosis (AVN).
• Problems with the functions of the lungs, heart or liver caused by damage to these organs.
• Mouth sores (mucositis) — A common early side effect that is a less common long-term problem, usually caused by GVHD.
• Dental problems.
• Risk of secondary cancers, especially skin cancers.
• Depression and other emotional or social problems.

There may be other possible late effects. Some of these and other late effects that may affect either children or adults are described in Managing Long-Term Effects of Transplant. Your child's disease, treatments and age at treatment all affect your child's risks. In addition, each child responds to treatment differently. Ask your child's transplant doctor about possible late effects that he or she will watch for in your child.

Resources for your doctor

Your child's follow-up care requires specialized knowledge. Your child's regular doctor should consult with your transplant doctor about any questions. The National Marrow Donor Program also offers resources for doctors. You can share information on Patient Care Post-Transplant with your child's doctor, or tell the doctor about the Physician Resources section of this Web site.

 

References

1. Phipps S, Dunavant M, Srivastava DK, Bowman L, Mulhern RK. Cognitive and academic functioning in survivors of pediatric bone marrow transplantation. J Clin Oncol. 2000; 18(5):1004-1011.
   http://www.jco.org/cgi/content/full/18/5/1004
   
2. Kupst MJ, Penati B, Debban B, et al. Cognitive and psychosocial functioning of pediatric hematopoietic stem cell transplant patients: A prospective longitudinal study. Bone Marrow Transplant. 2002; 30:609-617.
   http://www.nature.com/bmt/journal/v30/n9/abs/1703683a.html

Contributing editors

K. Scott Baker, M.D., Director, Blood and Marrow Transplant Outpatient Clinic, University of Minnesota BMT Program at Fairview University Medical Center, Minneapolis, Minn.
Nancy J. Bunin, M.D., Director, Blood and Marrow Transplantation, Children’s Hospital of Philadelphia, Philadelphia, Pa.
Eva C. Guinan, M.D., Associate Professor of Pediatrics, Harvard Medical School, Dana-Farber/Children’s Hospital, Boston, Mass.
Mary Jo Kupst, Ph.D., Professor of Pediatrics, Medical College of Wisconsin; Director, Program in Pediatric Psychology, Milwaukee, Wis.