Preparing Your Child for a Transplant
Kidney transplantation involves more than simply an operation. Preparation and evaluation, waiting for transplant and recovery following surgery are all part of a long journey for the transplant candidate and family. Even after full recovery, some lifestyle changes are necessary for continued health after transplantation.
How is a child evaluated for a transplant? What’s this process like?
The pediatric nephrologist determines when the timing for transplantation is optimal. At that point, the kidney transplant candidate needs to undergo an evaluation by the pediatric transplant team to determine whether transplantation is likely to be a safe and beneficial treatment option. This pre-transplant evaluation commonly involves:
- Blood tests, including blood group and tissue type analysis
- Chest X-ray
- Electrocardiogram and in some cases other heart testing
- Meeting with endocrinologists if diabetes is present or growth is delayed
- Meeting with urologists if there is a history of bladder or ureter problems
- Meeting with a transplant surgeon
Once a child is approved for kidney transplantation, the child is activated on the deceased donor transplant list, even if he or she has a living donor who is being evaluated in preparation for kidney donation. It sometimes happens that the child is matched for a deceased donor kidney, which is available before the living donor is ready for donation. While living donor kidneys have a better outcome, individual circumstances may sometimes require the family and transplant team to accept the kidney instead of waiting until the donor is ready. The decision is never made on a unilateral basis.
The transplant team monitors each child's medical status closely and verifies that all immunizations are up to date before a transplant.
Who is part of a child’s transplant team?
Medical professionals involved in a pediatric kidney transplant – the transplant team – typically include:
- Pediatric nephrologist
- Pediatric transplant surgeon
- Social workers
- Child psychiatrists
What should parents do while waiting for the transplant?
- Every patient on a kidney transplant list has to have a blood sample sent to the transplant center on a monthly basis. This is to assess whether the patient has developed new antibodies against potential donors of kidneys in the region. The higher the number of antibodies, the less likely it is for a patient to get a kidney transplant soon. Blood transfusions are the most common culprits for the development of new antibodies. This is why it is very important to keep the anemia controlled with medications and iron supplements, as needed.
- Keep in touch! While a child waits for a cadaver (deceased) kidney transplant, it is important to remain in close contact with the transplant team. Because the transplant team may need to reach a candidate's family at any time of the day or night, the transplant center will typically ask for home, work and cell phone numbers and may give the family a pager. Once a cadaver kidney becomes available, the child must come to the transplant center as quickly as possible, usually within eight hours of notification.
- Let your transplant team know immediately if your child becomes sick. Depending on the severity of the illness, transplant surgery may need to be postponed until the child is healthy enough for surgery.
- Stay near the transplant center or at least be available to travel with little notice.
How should parents help their child prepare for a kidney transplant?
As children in need of transplants differ in age and maturity levels, the approach at discussing transplantation should vary as well. The following guidelines were provided by Transplant Living, a United Network of Organ Sharing (UNOS) program:
Infants and Toddlers: It is very difficult to prepare an infant for a medical procedure. Older toddlers, however, may understand simple explanations. Regardless of age, the importance of creating a familiar and comfortable atmosphere in the hospital is crucial. While away from home, infants and toddlers will benefit from having family members with them as much as possible. Having familiar toys, videos or a favorite blanket can also help the child feel more at home.
Preschool: Preschool children can benefit from pre-hospitalization teaching. When explaining medical procedures to preschoolers, it is important to use reassuring vocabulary and simple explanations. In addition, because children are very aware of their parents' feelings, it is important to stay positive. Play therapists, nurses and other members of your transplant team can also assist in helping your pre-school age child understand certain topics and cope with the varying stress related to illness and transplantation. It may be useful to keep a diary that records your child's tests and operations to show them when they are older.
School-age: School-age children can benefit from pre-hospitalization teaching. In addition, because young children sometimes think an illness is punishment for something they have done, it is important to let young children know that the illness is not their fault.
When preparing your child for their medical procedure, it is important that you always answer their questions simply and truthfully, and unless they ask, not overload them with too many details.
- Encourage your child and their siblings to ask questions about anything that is worrying them.
- Take tours of the clinic, hospital room and ICU.
- Allowing your child to meet and speak to personnel from these areas can help to alleviate fears of the unknown.
- Inform your child about the types of tubes that will be used, what the incision will look like, what the typical hospital stay is like and what types of medication they will take after transplantation.
Adolescents: Dealing with an illness, in addition to helping your child handle stress associated with the transition from childhood to adulthood, can be very difficult. That's why supportive communication and careful preparation with this age group is especially important.
- Encourage your child to talk about his or her feelings. Listen when your child is talking and acknowledge his or her feelings as being real.
- Don't be afraid to ask your doctors and nurses to simplify complicated medical jargon and draw pictures if necessary.
- Prepare your child for the reactions of others. Parents can help their children by suggesting various simple and concise explanations.
- Additional help, like a therapist or psychologist, can often engage your child in conversation that they may not share with you.
- Encourage your child to tell their friends about the upcoming surgery so they can be a source of support.
- During the hospitalization, encourage friends, classmates and family members to visit or write to maintain communication.