Understanding the Transplant Journey

If your child’s doctor thinks they may be a good candidate for transplant, they will refer your child to the transplant program for evaluation.

The financial coordinator will review your insurance coverage and request any necessary approval from your insurance provider if needed. Next your child will be scheduled to meet with the transplant team.

The transplant team includes:

• A transplant surgeon
• A transplant provider specializing in treating your child’s condition
• Transplant coordinators
• Social workers
• Dietitian
• Other team members may include anesthesia or other specialists depending on your child’s condition

Your child must have a full evaluation before they can be placed on the waiting list. The transplant team will meet with you and your child and do a series of tests and consultations.

Once testing and evaluation is complete, the transplant selection committee will review the results and determine if transplantation is the best treatment option for your child.

If the team recommends an organ transplant for your child and caregivers are agreeable, your child will be placed on the United Network for Organ Sharing (UNOS) wait list (even if a living-donor transplant is being considered). Your child will wait to be matched with a donor organ from the UNOS wait list.

• For Liver and Kidney: if a living donor is a good fit for your child, interested individuals can begin the donor evaluation with our partners at the Henry Ford Transplant Institute who will help us determine who might be a good match for your child.

The waiting time on the transplant list may be from days to months depending on how urgently your child needs transplantation. It is important for your child to be as healthy as possible at the time of transplant. Your child will have close follow-up with their provider and transplant team to ensure testing remains up to date.

When your child is listed for transplant, you may be notified at any time that an organ has become available. Although there is no way to know when this will happen, there are some things you can do to help prepare your child and family:

• Make a list of things that your child will need at the hospital (favorite toy, book or stuffed animal)
• Develop a plan with your family and friends for who will watch your other children or pets while you are at the hospital
• Make sure you have needed items on hand if you need to leave for the hospital at short notice

When an organ becomes available for your child, you will be called by a transplant coordinator to check on your child’s current health. We want your child as healthy as possible for surgery. Your coordinator will discuss next steps including when and where to arrive at the hospital for final testing in preparation for surgery.

The surgeon and other team members will meet with you and your child to explain the surgery, answer questions, and obtain consent. Then, when both your child and the donated organ are ready for transplant, your child will be taken to the operating room where a team of doctors and nurses will prepare them for surgery.

After surgery, your child will go to the Pediatric Intensive Care Unit (PICU) where they will be watched closely. Once they are settled in their room, caregivers will be allowed to visit. The length of time your child will spend in the ICU will vary based on your child’s condition. Once they are stable, they will be sent to a hospital unit that cares for transplant patients. You will learn all about caring for your child’s new organ during this time.

After discharge from the hospital, your child will be closely followed by the transplant team to monitor for signs of infection and rejection along with their recovery since transplantation. It is extremely important to attend all clinic appointments and have all blood work done as ordered.

Frequent clinic visits are required the first few months after transplant. With time as your child recovers and their new organ is working well appointments become less frequent.

Between scheduled visits, our transplant team is readily accessible to address any questions or concerns regarding your child’s care. We are committed to providing ongoing support and timely communication to ensure continuity and peace of mind.