Management of the pediatric transplant patient requires the skill of many professionals trained in specialized surgical techniques, the medial care of the patient both before and after transplant, as well as the management of the medications needed to maintain the transplanted organ. The transplant team at Children’s Mercy Hospital has been specially trained to meet the unique needs of the pediatric patient and their families. The transplant coordinators and physicians are always available to answer your questions.
Your child’s transplant surgeon performs the transplant operation. The transplant surgeons are skilled in pediatric surgery, especially procedures of the liver, kidney, heart and blood vessels. The surgeons will also care for your child on a daily basis after the transplant, working closely with the transplant physician and coordinator.
Your child’s transplant physician is skilled in the medical treatment of children before and after transplant. They will be the primary doctor caring for your child from evaluation to transplant. After the surgery, they will work with the transplant surgeons to monitor the non-surgical aspects of your child’s care. After discharge they will work with your local doctor to meet your child’s long term medical needs.
These are experienced, registered nurses and advanced practice providers who coordinate all aspects of the transplant process both before and after the surgery, including discharge and follow up care. The coordinator is always available to answer any questions you may have about any aspect of transplantation. There are several transplant coordinators on the team. One coordinator will have primary responsibility for your child’s care but you will have contact with all of the nursing staff over the course of your child’s treatment.
This is a pharmacist who has special training with transplant medicines. Because medication is such an important part of life post-transplant, a transplant pharmacist personally meets with each transplant candidate and their family. The pharmacist will arrange for your child’s medicines and teach you what you need to know about dosing, side effects and administration times.
Transplant Infectious Disease Physicians
These are doctors who are specially trained to identify and treat all types of infections in the immunocompromised patient. They see all patients during the transplant evaluation to review vaccination records and infection history. After transplant they will work with the doctors to manage any infections which may occur.
A registered dietitian will help evaluate your child's nutritional status before the transplant as well as throughout the transplant period. The dietitian will work closely with you to develop the best diet for your child. Like the other members of the transplant team, the dietitian is experienced in developing special diets for children with your disease and is available to provide expert nutritional advice for your child's particular needs.
Pediatric psychologists are experts in child development and behavior as well as helping children and their families cope with the stresses that occur with transplantation. Your child will receive a thorough developmental assessment as part of the transplant evaluation. The psychologist is also available after transplant to assist with any concerns which may arise and aid as your child grows toward adulthood.
A social worker will help you cope with the many stresses that often accompany transplantation and hospitalization of your child so you won't have to face the difficult times alone. They will help your family understand the impact of your child’s disease and develop strategies to handle problems that come with your child needing a transplant. A social worker can help you find the resources you need before the transplant surgery such as transportation, lodging and financial assistance and can provide counseling and emotional support to help relieve any emotional distress you feel. The social worker will also make appropriate referrals to outside community resources if necessary.
Your financial coordinator will help you with financial aspects of care for transplant. The coordinator will provide estimates for procedure costs and assist with approval for care, as well as help you find alternate sources for funding.
Child Life/Child Development Specialists
These professionals help prepare your child emotionally for transplant surgery and the hospital stay. The child life specialist is also available to help siblings understand and cope with the stresses of having a sick brother or sister. During your child’s hospital stay, a child life specialist will be available to direct supervised playtime in the hospital's playroom or bedside, assist with distraction techniques during procedures, and coordinate special events for the children at the hospital.
Hospital chaplains are available to assist patients and families with the faith and spiritual issues that may arise during the course of the transplant experience. They assist persons from all faith traditions and their goal is to help you find the spiritual support you need. The chaplain can also help you by contacting your minister or other clergy from home or a clergy person from your faith tradition.
Many other specialists trained in pediatrics will help care for your child. These specialists include: pathologists, radiologists, respiratory therapists, and physical and occupational therapists.
Other staff members, including interns and residents, often accompany your physicians on rounds. These are licensed physicians who are receiving additional training in specialized medical or surgical skills under the supervision and direction of the transplant team.
Your transplant team wants you to be involved as much as possible in the care of your child. It is important for you to ask the team any questions you may have and report any changes in how you feel. The best way to remember all your questions or concerns is to write them down when you think of them. When the doctors make rounds, you can discuss each item on your list with the transplant team.