Pediatric lung transplant: The right medical care and the best possible support

Our median wait time for a lung transplant is less than 30 days. That’s shorter than other regional and national programs and means your child can start being a kid sooner. The Scientific Registry of Transplant Recipients (SRTR) provides data about each transplant center’s volume and outcomes.

UW Health experts successfully treat the most complex pediatric lung cases. We are a Center of Excellence for most insurance networks and Wisconsin’s only gold-level certified ECMO Center of Excellence. In addition, U.S. News & World Report ranks our American Family Children’s Hospital as the No. 1 hospital in Wisconsin.

Caring for kids who need more than one organ transplant is a complex process. Our experienced team works with our experts in heart, kidney, liver, lung and pancreas transplantation. Together we manage the care your child needs when they need more than one new organ.

UW Health is an academic medical center. We are dedicated to research, and our team has a long list of contributions that have changed the lives of transplant patients. Our research on immunosuppression is greatly improving the way kids live with new organs. Experts in pediatrics, cardiology and transplantation make up the UW Health team focused on creating better futures and easier experiences for transplant patients.

As your child grows up, our respected transplant program teaches them how to manage their own care.

It’s normal to worry when your child doesn’t feel well after a transplant. However, our entire team of pediatric experts is here for your family, whether your child gets a common infection or experiences complications.

You and our lung transplant team meet for a complete evaluation. During this time, your child receives:

• A mental and emotional health assessment if age appropriate

• A physical exam

• Right heart catheterization

• Consultations with other lung transplant team members

• Imaging tests

• Pulmonary function tests

Together we’ll talk about available support and any financial needs you may have. We encourage you to ask questions so we can address your concerns.

Our entire transplant team discusses everything related to your child’s health to decide if a lung transplant is the best option.

When your child is approved for a lung transplant, we place them on the list for one or two lungs. When a donor lung or lungs become available, they go to the young adult who is the best possible match, as identified by the United Network for Sharing Organs (UNOS).

UNOS determines when your child will receive donor organs. It may be days, weeks or months. In the meantime, we help you and your family stay prepared for lung transplant surgery. Depending on your child’s health, you wait for the lung transplant at home or in the hospital.

During your wait time, we provide ongoing care for your child. Regular doctor appointments help us monitor your child’s health. And, if needed, we provide ECMO and other treatments to keep their lungs functioning and help them feel better. We focus on maintaining good nutrition, muscle strength and mental health while waiting for transplant in order to improve your child’s post-transplant outcome.

In addition, our child life specialists help your child understand the surgery and know what to expect when they wake up after surgery.

When your child is matched with donor lungs, we call you right away to come to the hospital or notify you if your child is an inpatient. Once you arrive, we admit your child to the cardiac intensive care unit (CICU). There, your child will receive several pre-transplant tests, including:

• Blood tests

• Electrocardiogram (EKG)

• Chest X-ray or other imaging tests

Your care team will place an IV in your child to administer medicines to prevent infection and to help your child’s body accept the donor organs.

When the donor lungs are ready for transplantation, we take your child to the operating room. The transplantation procedure includes:

• Giving your child anesthesia, medicine to get them to sleep

• Placing your child on a heart-lung machine, which maintains blood flow and breathing for your child during surgery

• Removing your child’s failing lungs

• Connecting the donor lungs to your child’s respiratory system

After surgery, your child spends several days in the ICU recovering. During this time, your child will have:

• A breathing tube to help them breathe for the first one or two days after surgery

• A chest tube to help remove fluid for a few days to a week after surgery

• Cardiac monitors to track their vital signs

• IV medicines to prevent infection and rejection of the donor lungs

• Physical and occupational therapy a day or two after surgery

As your child gets stronger, they continue their recovery in a private room. You can stay in the room with your child. Your child will likely be in the hospital for two to three weeks before going home.

Our child life specialists provide activities to keep your child engaged while staying in their room.

As part of follow-up care, your care team teaches you about:

• Precautions to keep your child healthy

• Routines to follow once you return home

• Tracking your child’s care

• What to watch for, such as signs of infection and side effects

• Your child’s medicines and how and when to administer them

Your child continues their recovery at home. Together, you will have regular visits with their pediatrician and the transplant team. As follow-up care, you focus on helping your child get the right:

• Emotional support

• Exercise

• Nutrition

Your child will also need ongoing tests. A bronchoscopy lets the doctor see the inside of the lungs to check for infection. A biopsy takes a tissue sample to test for infection and signs of rejection. These tests occur five or six times the first year after a lung transplant.