Supporting your child through a transplant

An organ transplant is a big medical procedure – and it can be a lot to wrap your head around, especially for kids and teens.

“A transplant is life-changing,” says Kelsey Rogers, NCC, LPC-S, LMFT-S, RPT, Clinical Therapist at the Children's Health℠ Solid Organ Transplant Program. “It's very normal for kids to have ups and downs, physically and emotionally, and we're here to help them every step of the way.”

Her team helps kids prepare for the procedure, talk through fears and get back into routines after transplant. She shares insights for parents and kids to navigate the emotional aspects of a transplant and develop healthy coping skills.

Jean and Cameron also share tips based on their experience as parents of a child, Finley, who had a liver transplant at 16 months old.

“Now Finley is 4 and still sees Ms. Kelsey,” Jean says. “She’s helped him start to understand that his medical care isn’t a bad thing or a punishment – it's a good thing that helps keep him healthy.”

Helping your child learn about a transplant

How the care team explains a transplant to your child will depend on their age and which organ is being transplanted. But they’ll typically talk about how to prepare for surgery and use pictures and videos to explain the process.

Understanding that a transplanted organ comes from another person, sometimes a person who died, can be difficult to process. With young children, you may wait to explain this to them when they get older. With teens, child life specialists and mental health professionals help them process this information.

“Teens and parents have the opportunity to write a thank you letter to the donor family. It’s optional, but it can be helpful for processing,” Rogers says.

Common fears and how to support your child

It’s natural to feel scared or anxious before surgery. Kids and teens may be concerned about:

• Needle pokes

• The idea of surgery and if it will hurt

• Lack of control and not being able to do certain activities

• Their appearance, like swelling or a scar

• Feeling different after surgery

The number one thing you can do to help your child process these concerns is to be honest with them.

“If you tell them they’re going upstairs for a lollipop and then they get blood drawn instead, it can immediately break their trust in you and the providers,” Rogers says. “It’s always best to tell them what is going to happen because honesty generally helps reduce anxiety overall.”

Four-year-old Finley routinely comes in for checkups and lab draws. Rogers encourages his family to use a doctor play set and practice appointments at home, where Finley gets a turn to play the doctor and the patient.

“It has given him a better understanding of what’s going to happen and a chance to feel more in control,” Jean says.

Coping with emotions leading up to a transplant

Kids and teens may experience many emotions: fear, hope, anger, uncertainty and excitement. Adults in their lives can help process those feelings by:

• Validating them. If they say they’re scared, you might say, “I hear you, I understand you’re feeling scared right now. What can we do together to help you feel better?” This can be more helpful than simply telling them “Don’t be scared” or “There’s nothing to worry about.”

• Asking open-ended questions. You might try something like: “Is there anything you’re wondering about?” This may reveal a worry you didn’t know a child had.

• Asking directly about feelings. You might say: “I wonder if you feel scared right now…” If they shrug or nod, you can help them identify what might feel good in the moment, like a hug or doing a breathing exercise.

Simple coping exercises for kids and teens

Some simple and helpful coping exercises for kids include:

• Focusing on the 5 senses. Ask them what they see, smell, hear, feel and taste.

• Progressive muscle relaxation or a full body scan, where you focus on each muscle or body part and intentionally relax it.

• A categories game, where you name as many things in a category as they can (colors, animals, countries, foods).

• Guided relaxation activities through apps like Calm or Headspace.

“Coping skills are like sports or an instrument: you don’t get good at them overnight," Rogers said. “So it's really important for you and your child to regularly practice them.”

When to seek mental health support

Most kids have some worries before a major surgery. Your child may benefit from meeting with a mental health professional if they:

• Are so worried they can’t focus on – or are uninterested in – things that they usually enjoy.

• Can’t eat or sleep because they’re so worried.

• Seem scared or push back on things they used to be OK with. For example, they used to be OK with blood draws or going to the hospital, but now they scream or cry if you mention those things.

Adjusting to life after a transplant

In the days and weeks after transplant, your child’s care team will closely monitor their health. Your child will need to take medicine to protect their new organ, and the care team will help them get into the routine of taking it at the same times every day.

As they transition back to life at home, supporting your child will include:

• Getting back into a routine, even if it's different from what they’re used to.

• Finding ways to get back to activities they enjoy, even if participation looks different. This could mean going back to after-school activities twice per week instead of every day, or asking your child’s sports coach if they may be able to help on the sidelines.

• Coordinating with your child’s school about any accommodations they might need.

• Finding ways to reconnect with their friends and social life.

“You can practice what they want to tell their friends and what they want people to know,” Rogers says. “It's their story to tell and it’s up to them what they do and don’t share with others.”

Rogers' team also helps teenagers start to plan for the transition into adult care.

“Around age 14, we get kids to start thinking about them driving the boat, learning how to refill prescriptions, really understanding their medical care and starting to manage it on their own,” Rogers says.

Tips from a family that’s been through a transplant

Looking back, Jean and Cameron share additional tips for families:

• Write down your questions and never be afraid to ask them. Your care team is there to help you through the process.

• Don’t try to do this alone. Lean on your friends and family. Find support groups. Building a community can make the whole process a little easier.

• Use resources in the hospital, like child life, psychology and social work. They are there to help.

• Know that there is hope.

“Just a few days after Finley’s transplant it was like someone flipped a switch,” Cameron says. “His eyes were brighter, you could just see his personality coming through. Now he’s so social and you can just sit down and have these amazing conversations with him. It's so incredible to see him now after all he’s been through.”

Resources for families going through a transplant

• Support groups for kids and families

• Solid organ transplant events

• Camp Soar, a summer camp for teenagers who've had an organ transplant

• Books including The Strength of My Scars Children’s Books, Daniel Visits the Doctor by Becky Friedman, The Rabbit Listened By Cori Doerrfeld (available through the Children’s Health Library)

Learn more

Children's Health is home to one of the largest comprehensive pediatric transplant surgery programs in the country – with the skills and resources to diagnose and treat every aspect of organ health and care. Our providers lead with patient- and family-centered care that produces outcomes that exceed national standards. Learn more about our Pediatric Solid Organ Transplant Center.