Kidney Transplant for Children

  • Kidney Transplant: For Children

    More than 130 children have received kidney transplants at UI Children’s Hospital, and we rank among the nation’s best pediatric transplant centers with excellent outcomes for our patients.

    At the University of Iowa, we have a full team for the care of children with end stage renal disease, including a chronic kidney disease program, dialysis program, and a pediatric urology team to assure our patients are in optimal condition before they receive a kidney transplant.

    Our multi-disciplinary pediatric transplant team specializes in the care of children. Our care is delivered in a child-friendly environment, in a hospital that is child- and family-centered.

    Our care for your child and your family addresses your concerns. Our pediatricians and surgeons will take the time to explain your child’s condition and the way that a transplanted organ will improve his or her condition.

    We have specialized professionals in pediatric kidney transplantation as well as in rare renal diseases such as atypical HUS. Our specially trained team, which includes physicians, dietitians, psychologists, and social workers will see to it that your child and your family are prepared for making the transition to the new organ and overcoming any barriers to success.

    We will assist you throughout your child's transition to adulthood, helping assure the continued vitality of the transplanted organ.

    Our Team

    The Pediatric Kidney Transplant Team includes specialist in:

    Transplant Surgery
    Pediatric Nephrology
    Pediatric Urology
    • Chris Cooper, MD, FAAP
    • Kathleen Kieran, MD
    • Douglas Storm, FM, FAAP
    Transplant Coordination
    • Amanda Coulter, RN
    Nutrition
    • Susan J. Szmyrgala, RD
    Social Work
    • Jana Owczarzy LISW
    Transition to Adult Care
    Atypical HUS Specialists
    Financial Services
    • Heather Harroun

    Why Does My Child Need a Transplant?

    Children who undergo kidney transplant procedures generally experience longer life spans, improved growth and development, and enhanced quality of life compared to patients in their age group who receive chronic dialysis. In addition, a kidney transplant generally improves a patient’s energy and school performance. It also allows a return to a more normalized family and friend schedule for children who have been on dialysis prior to transplant.

    Pre-transplant Evaluation

    Preparing for a kidney transplantation can be very overwhelming. We will work with you to schedule your child for a full day of medical tests, consultations, educational conferences, and social services consultation to determine if transplant is the best option for his or her condition. Our specialists evaluate potential kidney transplant candidates. Your child will receive a variety of blood tests and other procedures in a child-friendly enviroment to provide a clear picture of their health and increase the likelihood of a successful outcome.

    Our goal is to help our patients get their transplant as quickly as possible, and our record shows that our patients spend fewer months on wait lists than other centers our size.

    Medical Tests

    • Blood samples help us assess the function of your child’s body systems, screen for viruses, and tissue typing.
    • Chest XR
    • EKG
    • VCUG (voiding cystourethrogram)

    Consultations

    • Pediatric Transplant Surgeon
    • Pediatric Nephrologist
    • Clinical Pediatric Psychologist
    • Pediatric Nutritionist
    • Financial counseling

    Educational Conference

    You will meet with a transplant coordinator, who is a registered nurse specializing in organ transplantation. She will be the person you will contact for any questions, and she will be able to guide you.

    During your meeting, she will describe all aspects of the transplant process. You will have ample opportunity to ask questions and discuss your concerns. The transplant coordinator will assist your family through preparation, education, and listing on the donor registry.

    Social Services

    A transplant social services representative will meet with your family during the evaluation. The social worker gathers information about coping abilities, support systems, and ability to follow important post-transplant instructions. The social worker provides emotional support and helps you explore appropriate groups and service agencies in your local community.

    Approval for Transplant

    When the evaluation is completed, the kidney transplant committee will review the results of tests, procedures, and consultations. This committee, which meets weekly, consists of the nurses, pediatric nephrologists, surgeons, social workers, and others who you have met throughout the evaluation process. All members contribute their opinion and a decision is made with regard to further testing, additional treatment, and when you should be added to the waiting list.

    If you are approved for transplantation, you will be placed on the recipient list of the United Network for Organ Sharing (UNOS). Kidney recipients are matched to donor according to blood type, tissue type, and waiting time on the list.

    The Surgery

    Patients awaiting a deceased donor organ may be called at any time. When the call comes, patients are admitted to the pediatric nephrology floor to prepare for surgery and obtain some tests.

    When a recipient receives a kidney from a living donor, the surgery time is planned. The recipient is admitted to the pediatric nephrology floor the afternoon before the surgery and we will get some tests and prepare your child for surgery. The morning of the surgery a parent can accompany the child into the pre-operative suite.

    The surgery can take about four to six hours depending on the patient’s medical condition and any other surgical procedures done at the time of transplant.

    Post-surgery Hospital Stay

    After surgery your child will be admitted to the Pediatric Intensive Care Unit (PICU) and the family may visit as soon as your child is settled in, which typically is within one hour.

    In the PICU your child will be cared for by the pediatric intensive care unit staff, which includes specialized pediatric nurses as well as the pediatric transplant team.

    After a couple of days your child will be transferred to the pediatric nephrology floor where we will work to reinforce the life habits that will support a life-long healthy outcome. We will adjust your child's medications based on lab results and make sure drinking and eating starts getting back to normal.

    Children are discharged when ready all signs show that they're ready to go home, which can be from 7-14 days on average. Families can find local accommodations, including the RonaldMcdonald House.

    Post-transplant

    The transplant team is designed to help patients and families transition into the transplant lifestyle. For the first two months your child will have more frequent labs and visits to our clinic. During the clinic visits we evaluate your child, talk about labs, and make sure you feel comfortable with his/her care and with the medications.

    If you live far away, we arrange housing for you and your family for about 4 weeks.

    After the first two months post transplant we slowly decrease the amount of lab checks and clinic visits. All patients are required to take antirejection medications for life, and will need to be closely monitored by kidney transplant specialists until they are transferred to an adult kidney specialist, usually around the time they turn 21.

    We have outreach clinics in the Quad Cities and Des Moines to help decrease the amount of travel for routine clinic visits.

    Transition to Adulthood

    The goal of the Transition of Care Program is to maximize the quantity and quality of life for children who have received an organ transplant. We work with adolescents as they mature into adulthood by providing high quality, developmentally appropriate healthcare services in the post-transplant setting.

    This process is gradual, and we assist parents in challenging their children to do age-appropriate tasks. We incorporate the use of technology like Medminder a Facebook application developed by one of our physician team members. Research shows that taking medication on time and every time can be a particularly challenging issue with teens and young adults. The University of Iowa MedMinder is designed to help patients remember to take their medications and to communicate directly with their doctor regarding medication issues. Patients are able to access Iowa MedMinder through a Facebook portal on their home computer, at school, or on a mobile device.

    After a patient—with the help of their doctors—tells MedMinder about what medications they are taking and when they need to take them it will send reminders via text messaging, e-mail, and even their Facebook profiles. Iowa MedMinder is unique in that it uses social media as a means to help teens track their medication schedules and communicate with their doctor.

    Iowa MedMinder is currently in development and is being beta tested with the help of volunteer patients. If you think MedMinder is a tool that you or your child might find useful please contact Dr. Patrick Brophy or Dr. Diana Zepeda-Orozco for more information.