How to talk to your child about organ transplantation at any age.
By Kristine McKenna, PhD, and Katharine Thomson, PhD
As all parents know, children of every age are special and this uniqueness will also extend to their preferences for receiving information about transplant. It is important to base the level of detail on your child’s age, developmental level, and personality. Sometimes it is tempting to not talk with children or adolescents about transplant because it can be overwhelming for everyone in the family. However, they can become more afraid when they do not know what is happening and can make themselves more nervous by trying to guess. Below are some guidelines based on age to help start discussions. You can then let them lead the conversation- answering the questions they ask. Often times a simple answer is all they need. You can ask follow-up questions to see if your child understands the information and guide the conversation based on their preferred pace and level of detail. We all learn from doing, seeing, and hearing things over and over and it is not uncommon to review information multiple times to increase understanding. It is also important to have these conversations with other children and adolescents in the home so that they understand what is happening as well.
Infants (birth to 12 months)
- Infants will not understand transplant but will benefit from the reassurance and support parents provide at home and in the hospital.
Toddlers (12 months to 3 years)
- Toddlers begin to do more on their own and voice their own opinions. They may think they somehow caused the illness or surgery.
- Use simple words and pictures to explain medical topics. Medical play (playing doctor) also can help them explore their understanding of body parts and may increase their comfort with medical devices.
Example explanation: “Your doctors want you to be able to play and have fun. They are going to give you a new heart so you can have more energy to be silly and laugh.”
- If your toddler had a transplant as an infant, it is helpful to talk about transplant as soon as possible, and the above explanation can be adjusted accordingly. Not only will the discussions help them understand their body, but will importantly build trust with parents and the medical team early on.
Preschool-age children (3 years to 5 years)
- Preschoolers have more words to express themselves and ask questions. They also think in magical terms and may see a surgery as punishment for doing something bad, or the transplant as something contagious, like a cold.
- Use simple words and pictures to explain medical topics. Medical play can help explore understanding of procedures and body parts.
- Many children this age are worried about procedures hurting, so it is important to reassure your child that special medicine is used so they will be in a deep sleep and should not feel, hear, or see anything. Reassure your child that you will be there after they wake up.
Example explanation: “Your doctors want you to be able to play and have fun. They are going to give you a new kidney so you can have more energy to run around. You have a special job too. You will help your new kidney stay strong by drinking water and giving it special medicine.”
- If your preschooler had a transplant in the past, you'll want to continue to have conversations about what happened. Preschoolers are developing a sense of self and may be curious about their body; parents can help to build healthy and honest narratives surrounding visible scars and the need for special diets or medications.
School-Age Children (6 years to 12 years)
- School-age children are learning and exploring. They understand cause-and-effect principles and can be given more information about how organs work and organ donation.
- Using simple, straightforward terms is still best with this age group, although including more detail may be helpful, especially with children who are detail-oriented and curious. Try to avoid words like “bad” and “good”, and instead use terms like “sick,” “healthy” and “well.”
- Many children this age are still worried about procedures hurting, so it is important to reassure them that special medicine is used so they will be in a deep sleep and should not feel, hear, or see anything. Reassure your child that you will be there after they wake up.
- It will also be helpful to talk about what to expect after transplant (e.g., some soreness, taking medicines, follow-up clinic visits) so that your child can prepare. This discussion also promotes trust.
Example deceased donor explanation: “Your liver is sick and not able to do its job well anymore. The doctors are going to find a new liver for you. It will come from someone who does not need it anymore and whose family wants to give a special gift to help someone else—like you.”
Example living donor explanation: “Your liver is sick and is not able to do its job well anymore. The doctors did some tests and found out that your dad has a liver that is very similar to your liver. He is going to be able to give you part of his liver so you can feel better. Dad will be okay without that part of his liver.”
Adolescents (13 years to 18 years)
- Adolescents are working toward independence. They are able to grasp more complex concepts about their medical condition, including risks associated with procedures.
- They will benefit from talks with parents, but also may have their own questions for the medical team. Many adolescents benefit from having discussions with medical providers on their own in order to have the opportunity to ask questions without worrying about protecting parents.
Example explanation: “Your lung functioning is getting worse even though we have tried lots of other treatments to help. The doctors believe transplant is your best option now and will find new lungs that are the best match for you. The lungs will come from someone who has died and whose family wants to give a special gift to help someone else - like you.”
**For more information or additional resources please contact your transplant team.**
Children’s book about transplant
Tips for supporting siblings