Transplant Talk: How to Talk to Kids about Your Lung Transplant

How will you tell the children in your life about your impending lung transplant?

How much detail should you share, and when?  Our expert speaker, Christopher Bowers, is an Associate Marriage and Family Therapist who received a heart and liver transplant while parenting a toddler. He will be joined by Nicole Wills, a Lung Transplant Foundation mentor who received a lung transplant while parenting an elementary-aged child. Together, they share their experiences preparing their young children for their parents’ transplant journey, interpreting children’s unique reactions to medically complex situations, and drawing in community support. Whether you are a parent or an important adult in a child’s life, this Transplant Talk is for you! Recorded August 28, 2025.

Kids Know When Something’s Off: The Importance of Honesty

Children are incredibly perceptive and will sense when something is wrong, even if you try to hide it. They can feel when a situation is off. If adults pretend that everything is okay when it’s not, it can be a disservice to the child. Therefore, it’s crucial to find an honest, age-appropriate way to talk to them about your health.

• Be Honest about Your Symptoms: You can start by simply explaining your symptoms in a straightforward way, such as, “You may have noticed I’ve been really tired lately”. This provides a basic, truthful framework without overwhelming them.
• Explain “Non-Functionality”: For younger kids, you can talk about the concept of “non-functionality”. This means explaining that a body part, like your heart or lungs, isn’t working as it used to. You can mention that you have doctors who are helping you.
• Don’t Force the Conversation: While having an open-door policy for communication is important, don’t force them to talk. You can create opportunities for conversation during calm activities like baking, playing with stuffed animals, or a bedtime routine.

How Kids Process Difficult Information

Children, especially younger ones, may not express their feelings in direct, verbal ways like adults. Their emotions often come out in other forms.

• Processing Through Play: A key way children process things is through play. Christopher shared that his son, after his father’s transplant, became “obsessed with emergency play” involving ambulances and fire trucks. This was a healthy coping mechanism for the child to process his feelings.
• Concrete vs. Abstract Concepts: Younger children have difficulty with abstract concepts like death or disease but can handle concrete ideas. For example, when Christopher’s son was told his uncle had died, his immediate question was, “where is his body now?”. He then went back to playing, processing the information over time.

What to Look for: Recognizing Red Flags

While some changes in behavior are normal for a child experiencing a parent’s illness, there are red flags to watch for that may indicate they need extra support.

• Extreme Behavioral Changes: Look for extreme changes in emotions, school performance, or friendships. For Christopher’s son, anxiety manifested as picking at his hands and repeating words.
• Signs for Professional Help: While an 8-year-old screaming and hitting a wall is a red flag, it’s important to consider their developmental stage. Other serious red flags include any talk of self-harm or suicidality. If these behaviors occur, it may be time to seek professional help.

Nurturing Your Child’s Emotional Well-Being

As a parent, you can take steps to support your child and help them develop emotional resilience.

• Teach Emotional Literacy: Help your child understand emotions in general, even through simple activities like reading a book together and asking, “What do you think this character is feeling?”.
• Model Your Own Feelings: It’s important to model your own feelings and show your child that it’s okay to be sad or scared. This teaches them that their emotions are valid.
• Acknowledge Mixed Emotions: Help your child understand that it is possible to have two emotions at once. For example, a child can be happy that you are home but also angry about your absence. This is similar to how a transplant recipient can feel both excited about the possibility of a new life and terrified of the process.
• Address Magical Thinking: Young children (age 7 and under) might engage in “magical thinking” and blame themselves for your illness, believing that something they did or said caused it. Make sure to reassure them that it’s not their fault and has to do with your body’s function.

A Parent’s Perspective

Nicole Wills, a Lung Transplant Foundation mentor and lung transplant recipient, provides a valuable parent’s perspective. She highlights the unique challenges and triumphs of navigating a medical journey while raising an elementary-aged child. Nicole shares her personal story, offering practical advice and emotional support to other parents. She emphasizes the importance of open communication and community support, showing how her family’s experience with her transplant journey brought them closer and created opportunities for growth. Her insights provide a relatable and encouraging viewpoint for families facing similar situations.