Pediatric Kidney Transplant Journey

The Pediatric Kidney Transplant Journey

Pre-Transplant Journey

Jeffry Fadrowsky, M.D. (right) with Shon Henderson in the Johns Hopkins Children's Center

Preparing for kidney transplantation can be very stressful.  Transplantation in children requires keen understanding of the impact of illness on both the patient and family. Johns Hopkins is one of only a few institutions with a dedicated children’s transplant team.  During the general evaluation you and your child will meet with many members of 
your child's pediatric kidney transplant team 
including: specialty doctors, nurses, surgeons, etc.

The medical evaluation (or "work-up") generally consists of blood-typing, viral screening, a VCUG (voiding cystourethrogram), chest X-ray and a an ultrasound of the kidneys.  Most work-ups take approximately a few weeks to a few months depending on the severity of the illness and the size of the child.  When the work-up is complete, a letter of medical necessity as well as all medical information is sent to the insurance provider to request authorization to place the child on the United Network for Organ Sharing (UNOS) waiting list, the national, government-regulated waiting list.

Living Donor Option

If there is a suitable adult with a compatible blood type with the child, then a living donor may be evaluated to donate his or her kidney.  Work-up for the adult is very similar to the child and will include blood work and special imaging of the kidney.  More detailed information about this part of the kidney transplant journey is available on the living donor workup page of this website. 

Surgery

Patients awaiting a deceased donor organ may be called at any time. When the call comes, patients proceed to the Emergency Room to prepare for surgery.  For living donors and recipients, the surgery can be planned.  The donor and recipient are asked to come to a preoperative care area the morning of surgery.  A parent may accompany the child into the operating room and may stay until the child is asleep.

The pediatric surgery can take from upwards of 6 hours, depending on the patient’s medical condition and previous surgeries. After surgery, the adult living donor will proceed to the surgical intensive care unit (SICU), usually for 24 to 48 hours. After surgery, the patient will proceed to pediatric intensive care unit (PICU).  Family may visit as soon as the child is "settled in," which is typically within the hour.  See the living donor journey page of our website for more information about the donor's preparation for surgery and recovery.

Post-Transplant Journey

After surgery, patients go from the PICU to a special unit with other pediatric patients whose pediatric nurses and specialists from our child life division provide resources and care designed to speed their patients’ recovery.  The transplant team is designed to help patients and families transition into the transplant lifestyle.  Patients are usually discharged home after 7 to 14 days.  Patients will continue to be closely followed in clinic until the age of 22, when they are transferred to an adult kidney specialist, or nephrologist.  All patients are required to take antirejection medications for life, and will need to be closely monitored by kidney transplant specialists.  The goal of kidney transplantation is to allow the child with chronic kidney disease to lead a normal and healthy lifestyle.  More detailed information about this part of the transplant journey is available in our Pediatric Kidney Transplant Book.

Other links in the Pediatric Kidney Transplant site:

Overview
Transplant Team 
Information for Healthcare Professionals