By Julie Ross, RN, Debra Schoborg, RN & Frederic Strife, MD

After much planning, anticipation and worry, the kidney transplant has finally occurred! It is smooth sailing now. Right? Parents are often surprised at just how complex their child’s management is after transplantation. Children who receive a kidney transplant will not only undergo a big operation, but will also have dramatic changes in their body’s ability to manage waste products. This simple improvement in body function leads to so many changes that it is difficult for parents to know how to help their child adjust. The transplanted child will not only have frequent and possibly stressful doctor visits, blood tests and medicine changes, but also will feel better, be more active, have more energy, eat more and think more clearly. At the same time, the child may exhibit adverse effects of medications or possibly have complications related to the transplant. A goal of the child’s transplant team is to help parents learn prior to the transplant operation about both the good changes and the possible adverse complications that may occur. Parents can best help their child by being as prepared as possible prior to the operation.

The most dramatic change that occurs to a child following kidney transplantation is an overall improvement in how the child feels. Energy and activity can improve so quickly that parents may be surprised and even unprepared. Parents of recently transplanted toddlers have actually complained that their child’s activity level was exhausting and expressed concern that their child had become hyperactive. In fact, their child was now acting like a normal toddler, which, as we all know, is exhausting. Older children and adolescents express their improved energy with more aggressive play that may seem too rough. Parents need to be prepared to set reasonable limits on their child’s play, yet not inhibit activities to the point that the child is treated differently. This is difficult for parents and can be helped by having pre-operative discussions about physical activity limitations with the transplant team. Following these discussions, the parents must then decide and together agree on the limits they will set for their child, remembering that traumatic injury to a kidney transplant is rare. Under most circumstances, common sense prevails. High-risk activities such as trampoline jumping, sliding into base headfirst, full contact football and boxing make no sense, but most school and backyard sports are generally acceptable, if supervised.

Many children with renal insufficiency, especially those with abnormal kidney function from birth, develop slowly and experience delays in motor and cognitive skills. Older children often have deterioration in their schoolwork as their kidney function slowly worsens. Following transplantation, many children will have marked improvement in both motor and cognitive skills.  The parent generally sees this as improved school performance and play skills. Parents can help their children by doing everything possible prior to transplant to maintain motor skills, such as participation in school activities, play or physical therapy. For older children, maintaining school attendance and, if necessary, working with the school to prepare an individualized education plan can help.

As a part of feeling well and stimulated by treatment with steroids, a transplanted child’s appetite will improve dramatically. Prior to transplant, many children require supplemental feedings, either in the form of liquid supplements or, in younger children, nasogastric or G-tube feedings, to overcome their poor appetite. Suddenly, following transplantation, the same group of doctors, nurses and dietitians are asking the child to watch his/her weight and limit caloric intake. This can be very confusing to the children and their parents unless clearly discussed prior to transplantation. Young children never understand limiting their food intake, whereas older children may understand but have great difficulty. Parents can help their children by assuring that healthy food choices are available to them at home. Simple things such as reducing or eliminating consumption of sugar-containing drinks can be very helpful. The entire family’s participation in healthy eating habits is important and can benefit all family members as well as the child.

Transplantation may also bring changes that are not pleasant. The child needs to take medications to prevent rejection, infection and often to treat high blood pressure or other medication side effects. Some of the medications need to be taken more than once a day and can amount to a large number of pills or teaspoons. Managing medicines is stressful and can create conflicts with the child. Parents need to tell the transplant team if any of the medications bother the child so they can plan the best combination of medicines. Despite these efforts, some of the medicines may taste bad and others may cause unpleasant side effects. These side effects should be reported to the transplant team. Parents can help their child by becoming familiar with the names of the medications, the reason for their use and how they are given. Parents can help younger children by taking complete responsibility for the medicines. Older children, including adolescents and even young adults, still need support and supervision to assure that they take their medications as prescribed. Although parents may want to see their adolescent take responsibility, experience has shown this group of transplant recipients to be at the highest risk for rejection from forgetting or neglecting to take their medicine. Parents can help their transplanted adolescent by working out a creative “deal” whereby the parent can continue to closely monitor the medication compliance, yet not make the adolescent feel overly dependent.

Social readjustment and body image can be a major issue for a child and especially an adolescent following transplantation. When the child returns to school, he/she may look different than before the transplant. Steroids tend to redistribute fat in the body from the legs to the face (cheeks), to the back of the neck and to the middle of the abdomen. This can often result in teasing from the child’s peers. Parents and doctors need to reassure the child that these physical changes will improve as the steroid dose is reduced.

Adolescents are especially prone to get acne, another steroid side effect. Standard acne treatment can help, but improvement often must wait for reduction in steroid dose. Short stature and bone deformities that occurred during the stages of renal insufficiency may make the child look or walk differently. With time, bone abnormalities and growth should improve. Many children now receive growth hormone following the transplant to help growth. Lastly, some children who are transplanted have abnormal bladder function and need to use a catheter several times a day to drain their bladder. Some may also need to catheterize at some point during the school day. Parents can help their child manage these differences by planning ahead with the school. They can also help by lending support to the child by emphasizing the child’s good physical attributes and by emphasizing that the long-term outcome of many of the physical changes will be minimal. 

Depression is common among children while on dialysis, but is uncommon in those who have received a kidney transplant. However, most children and adolescents will have significant and appropriate fears related to their operation and to their donor’s operation. Every effort should be made by both the parents and the transplant team to identify if a child is having problems coping with their changes and fears following transplantation.  The sooner professional psychological help is started, the more likely it will help the child.

We all know that a parent’s job is never done. However, the job of a transplanted child’s parent can be especially challenging. Their many efforts and sacrifices contribute greatly to their child reaching the eventual goals of a successful kidney transplant. These goals include having the child make the necessary adjustments to experience as happy and normal a life as possible. All parents try to protect and guide their children. Some might say that parents “over protective.” However, their degree of protectiveness is usually appropriate for the illness their child has had and should not be considered “over protective.”  This natural need to help a child is a wonderful part of parenting.

Ms. Ross is a Pediatric Renal Nurse Coordinator at Cincinnati Children’s Hospital with primary responsibility for coordinating renal transplantation. Ms. Schoborg is also a Pediatric Renal Nurse Coordinator at Cincinnati Children’s Hospital with long experience in pediatric dialysis and transplantation. Dr. Strife is a Pediatric Nephrologist at Cincinnati Children’s Hospital with over 20 years experience caring for children and adolescents with renal transplants. He is Medical Director of the Cincinnati Children’s Hospital Medical Center Dialysis Unit and Professor of Pediatrics at The University of Cincinnati College of Medicine.

This article originally appeared in the January 2004 issue of aakpRENALIFE, Vol. 19, No. 4.

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