Supporting Children through Heart Transplant

Families have many meetings with hospital staff before a heart transplant. During these meetings, families can:

• Ask who will be on the transplant team

• Ask the team to tell them exactly what to expect

  • The journey to transplant often comes with a lot of uncertainty. Sometimes, the care team will not know exactly what will happen, but they can help the family understand possibilities.

• Keep asking questions until they understand

• Figure out who at the hospital can support the family before, during, and after the transplant:

  • Social workers?

  • A chaplain?

  • A parent group?

  • A hospital psychologist?

  • Child Life Specialists?

  • Palliative care clinicians?

• Ask for a referral to a therapist for each person in the family, to manage the feelings and thoughts connected with the transplant process

Children, teens, and young adults also need to be prepared for their heart transplant.  The preparation depends on how old the patient is, and how much they talk and understand.

Families can ask their hospital transplant team for help in telling their child about the transplant. Usually, a Child Life Specialist, nurse, psychologist, chaplain, and/or social worker can help families with this conversation.

Families often find it helpful to tell a child something like:

• Their family and medical staff care about them, and want them to get better

• Their own heart is not working well enough to keep them healthy

• The doctors do not think they can fix their own heart well enough with surgery or medicine

• The doctors believe that getting a new heart will make them healthy and strong

Families and medical staff can invite a young person to ask whatever they are wondering about the transplant. Adults are often surprised by what kids think about and wonder about. Adults should answer what their children ask as well as they can, without providing extra information.

Transplants come with a lot of uncertainty, and adults may not know exactly what the child will experience. Adults can answer questions truthfully, telling children honestly when they do not know the answer to a question.

The process before, during, and after a heart transplant looks very different for different patients. As a result, adults usually cannot tell young people everything that will happen with certainty. Many children feel reassured when they know the first things that will happen, and when caregivers promise to keep them informed as their hospital stay progresses. Caregivers can promise children that they will not be alone, and that adults will always be taking good care of them.

Caregivers of older children, teens, and young adults may need to be prepared to discuss difficult questions about a heart transplant. Parents do not need to manage these conversations alone. Hospital staff can help support families before, during, and after challenging conversations, including:

• Child Life Specialists

• Palliative care clinicians

• Social workers

• Psychologists

• Spiritual care staff

Families can ask their transplant care team for the best people to help them at their hospital.

In some cases, the donor family and recipient family may want to connect with one another. Families can ask their hospital if such a connection is an option.

Families can always ask for help from hospital staff in having discussions with their children.

Caregivers often use books and websites to help prepare young people and their siblings for a heart transplant. Families should preview resources before sharing them with their children, to ensure that they align with their goals and values.

These links and titles are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites and in these resources.

Books for younger children:

• Avery's Gift, by Jon Hoefer

• A Gift of Life, by Rachelle Burk

• The Gift: A book for children about organ donation from a deceased donor, by Shaindy Alexander and Diana Lee

• A Heart on Valentine's Day, by Hailey Steimel

• Howl Gets a Heart, by Brenda Cortez

• Little Panda and her Superheart, by Marta Esteva

• My Generous Sister Lexi, by Heather Hamilton-Hawke

• A Transplant for Ivy, by Emily Burgess

• Your Transplant Adventure, by Matt Butler

Books for older children, teens, and young adults:

• Change of Heart, by Kristy Sidlar

• Everything I Thought I Knew, by Shannon Takaoka

• The Heart Between Us, by Lindsay Harrel

• A Heart Like Ringo Starr, by Linda Oatman High

• Heart to Heart, by Lurlene McDaniel

• The Mighty Heart of Sunny St. James, by Ashley Herring Blake

• My Glory Was I Had Such Friends, by Amy Silverstein

• Searching for David's Heart, by Cherie Benne

• Sick Girl, by Amy Silverstein

• Your Transplant Adventure, by Matt Butler

Young people and their families often have to wait for a heart to become available for transplant. They may wait for days, weeks, months, or even years. Sometimes, young people are able to wait for a transplant partly or entirely at home. Other times, young people wait for a transplant in the hospital.

Patients and their families often feel high levels of stress while they wait for transplant.  Most young people, parents, and siblings do better with a therapist who can help them to manage their worries, fears, hopes, and emotions.

Families usually have a lot of warning that a young person will receive a transplant.  But, they usually do not know when the transplant surgery will be. When families are waiting for a transplant at home, they need to be ready as soon as they get the call that a heart is ready. 

During their wait, families usually feel calmest when they are as prepared as possible for the big day. These steps can help:

• Make sure everyone in the family understands the hospital process when a heart becomes available.  Keep asking the medical team until everyone's questions are answered as well as possible. Keep in mind that transplant hospitalizations and surgeries can be unpredictable, so some questions will not have definite answers.

• Make a family checklist that shows the steps of getting ready to go to the hospital.  Following this checklist can help everyone stay calm, and not forget anything.

• Plan who can help take care of the family home, and know how quickly they could come when needed. Consider who will:

  • Take care of other children?

  • Pet sit?

  • Drive children and do errands?

  • Cook?

  • Water plants?

• Figure out a transportation plan to get to the hospital, and to go back and forth after the surgery. It can help to:

  • Make sure any cars always have gas

  • If you live in a place with snow, make sure to have snow tires, and keep the cars dug out and available

  • Buy public transportation tickets ahead of time

  • Know where to park at the hospital

  • Put the hospital address in the GPS as a favorite place

  • Never travel far from the hospital

  • Consider asking someone else to drive just in case family members are very anxious

• Pack a hospital bag for the sick child, and the caregivers who will go to the hospital. The child can help to pack their own bag.

• Consider packing:

  • Pajamas (for the child, make sure pajamas have snaps and/or open in the front)

  • Slippers

  • Grip socks

  • Toothbrush and toothpaste

  • Preferred soap and shampoo

  • Bath towel

  • Medications in original packaging

  • Change of comfortable clothes

  • Activities (book, puzzle, knitting, toys)

  • Headphones

  • Devices

  • Chargers

  • Comfort objects (blankie, stuffed animal, pacifier)

  • A blanket

  • A record of important phone numbers

  • Eye glasses

  • A special gift that the child can open after the surgery

Sometimes, young people waiting for a heart transplant spend part or all of their waiting time in a hospital. Staying in the hospital while waiting for a transplant can provide a sense of safety, since families are confident that a child is well-monitored, and that medical help is available if needed. However, waiting in the hospital can also present unique stressors.

Families often struggle with the uncertainty that comes with waiting. Uncertainty makes it hard to plan, and hard to know how to feel. Children and families often feel a mix of complex feelings, such as fear, relief, impatience, sadness, and excitement. Feelings can change from day to day, and even from minute to minute.

These strategies can help make the wait in a hospital easier for many families:

Keep the child busy, interested, and working on developmental goals:

• Talk to Child Life about activities and play spaces around the hospital

  • Arrange hospital instruction for school-age children (ages 3-21)

  • Ask about music therapy, art therapy, and therapy animal visits

  • Look for homebound virtual camps and other activities for homebound children

  • Talk to hospital staff and/or school staff about arranging physical therapy (PT), occupational therapy (OT), and/or speech-language therapy (SLT)

• Stay connected with people who care and understand

  • Find a therapist for each family member

  • Reach out to families who have been through similar experiences

  • Find opportunities for healthy siblings to spend time with other siblings of sick children

  • Encourage visits and video calls with friends, family, and a child's school, to the extent that feels good

• Make and take space for each family member

  • Try to take turns leaving the hospital, and doing things that are unconnected with the child's illness

  • Continue basic self-care: shower, eat food that feels good, drink enough water, get sleep, do activities unrelated to the hospital that bring calm or satisfaction

  • Practice calming strategies: meditate, do yoga, do progressive muscle relaxations

• Preserve family routines, and make new ones, to the degree possible

  • Ask Child Life Specialists if there's a way to recreate important family routines: Sunday dinners? family movie nights? morning walks?

  • Find new ways to connect as a family in the hospital, and make new routines: daily card games? ice-cream sundaes? decorating the room for each holiday? trivia games over video call? hide and seek in the lobby?

Although a hospital room is not a home, hospital staff can work together with a family to make it as comfortable as possible. Families can often be surprised by the moments of joy they can create together in a hospital.

Sometimes, doctors think that they have a donor heart that is appropriate for a particular young person. A child and family may start getting ready for surgery, and then learn that the heart is not a good fit after all.

Make a family plan for what will happen if they travel to the hospital, and the transplant does not happen. It can be very hard to get prepared, and then be disappointed. Planning an activity in that case can help, such as:

• Go to eat at a favorite restaurant

• See a movie

• Play a special game

Many families like to practice calming strategies before they go for a transplant surgery.  They can use these strategies before, during, and after the transplant itself.  A therapist or counselor can help family members to learn and practice strategies that work for them.

Calming strategies can include:

• Meditating

• “Grounding”: focusing on something here and now

• Talking back to fears and worries: reframing fears with a more hopeful or interpretation

• Breathing slowly and deeply

• Repeating a mantra

• Mindful exercise: walking, yoga, stretching

When a young person is in a transplant surgery, they do not feel anything, and do not know where they are. They are not aware of anything until they wake up in the cardiac intensive care unit (CICU). 

 amilies can ask the care team when they will likely get updates on their child, and how they will get the updates.  Families can tell the care team how they would prefer to receive information about their child’s progress, and care teams will generally do the best they can to oblige them.

Transplant surgeries are complicated, and can take many hours. They can be unpredictable, so families may have to tolerate a level of uncertainty when going into the surgery. Family members can try to plan how they will take care of themselves during their loved one’s transplant surgery. 

Many parents and other family members find it helpful to plan:

• What and when they will eat and drink, and who will get the food and drink

• Comfort items to bring along, such as a soft blanket, religious book, smooth stone, or nice-smelling lotion

• Who they want with them, and/or who they want to call on the phone

• Calming strategies to practice ahead of time, and then use on the day of the surgery, such as:

  • Meditation

  • Walking or yoga

  • “Talking back” to worries

  • Grounding: focusing on the sensations of the current moment

  • Visualizing what they will do with the child after the surgery is complete

• Activities for distraction, such as:

  • Watching a TV show or movie

  • Playing a game on their phone or computer

  • Knitting or sewing

  • Reading a book

  • Crossword or sudoku puzzles

  • Walking

  • Calling a family member or friend

  • Drawing or writing

• Making something for the child in surgery

After heart surgery, patients begin their recovery in the cardiac intensive care unit (CICU).  Family members are usually allowed to visit soon after the patient is settled in their room. 

At first, people recovering from a heart transplant are given medicine to make them sleep (sedation), and a machine breathing for them (a ventilator).  They have many tubes and wires connected to their bodies so that doctors and nurses can monitor how they are doing, and manage their fluids and nutrition.

A few days after a heart transplant, most people are able to breathe on their own.  Some patients need extra time to recover before they are ready to breathe. Most patients stay in the CICU for about a week after a transplant.  Some patients need to stay longer in order to become stable. 

When a patient is ready to move out of the CICU, they are usually transferred to a regular hospital room.  Most patients stay in the hospital for about 2-4 weeks after a transplant surgery.  Some patients need to stay longer, if their bodies take longer to heal.

During their hospital stay, staff teach families and patients how to care for the new heart.  They learn how to prevent infection, and how to manage the medicines that will prevent their bodies from rejecting the new organ.

 Even while they are in the hospital, most young people can work on regaining skills and strength.  Families can talk with hospital staff about therapies such as:

• Physical therapy (PT)

• Occupational therapy (OT)

• Speech and language therapy

When young people start these therapies as soon as they are ready, their recovery is usually faster and easier.

Families often have many complex emotions when it is time to go home after a heart transplant surgery.  Everyone in the family should take time to recognize their feelings, and to get used to a new situation. Therapists can help each family member to cope and adjust.

When a patient goes home after transplant surgery, they have special instructions to take care of their new heart.  Hospital staff are available to help families to understand the instructions, and to feel confident in taking care of the patient and their new heart.

Usually, people with a new heart must:

• Take special care to avoid illness and infection

• Return to the hospital often for tests

• Take medicine every day to prevent rejection

A heart transplant surgery can affect how a young person functions.

• Many patients feel better than they ever have before

• Some patients face new challenges in their development

Once a young person has physically recovered from a heart transplant surgery, they should often be evaluated in order to understand their strengths and needs.  Families can talk with their doctors about where and how to find a good evaluation. 

In many cases:

• A physical therapist (PT) should evaluate how the young person uses their arms, and legs (all ages)

• An occupational therapist (OT) should evaluate how the young person uses their hands, and how they do daily tasks (all ages)

• A speech/language pathologist (SLP) should evaluate how the young person communicates, and also how they swallow and eat (all ages)

• A psychologist should evaluate how the young person focuses, feels, thinks, learns, remembers, and understands (all ages)

• A psychologist or educator should evaluate how the young person learns reading, writing, and math skills (ages 3 and up)

After a heart transplant, many patients need rehabilitation and therapy. Families should talk with their doctors about the therapies available from a hospital, and in their communities.

 In addition to hospital treatments:

o   Babies and toddlers (ages 0, 1, 2) should be referred to Early Intervention (EI), and receive all available services

o   School-age children (ages 3-18 or 3-22, depending on need) should often receive services through their school district’s Special Education program

Undergoing a heart transplant can feel like an epic journey, both for the patient, and for everyone who loves and support them. Each stage of the journey can bring strong and conflicting feelings, as well as unexpected twists and turns. Children and their families often spend months or years processing all the thoughts, feelings, and experiences associated with a heart transplant.

Families should know that complex and evolving emotions are normal, and that they do not need to face them alone. By seeking help from professionals and connecting with other families, those undergoing heart transplant can come out other side feeling stronger than ever: physically, emotionally, and as a family unit.

This content was reviewed by staff at Boston Children's Hospital.

Care is usually best when it is local. Families local to Boston can seek support from the Heart Transplant Program, the Cardiac Neurodevelopmental Program (CNP), Child Life, Spiritual Care, Social Work, and/or the Pediatric Advanced Care Team (PACT). Families in other regions can click below to find local care.

Links to additional sources of support are provided below. These links are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites.