Talking with your kids about your transplant

By Rebecca Hays, MSW

When a family member gets a transplant, the whole family is affected, even if they don't all show it. Everyone has questions about how a transplant will affect their own life and the patient's life, as well as future plans. If a parent gets a transplant, children have questions too. Some children are outspoken and ask lots of questions, while others may be quieter or afraid of the answers. These are some thoughts about opening up the lines of communication between parents and children of all ages. Of course, your child's questions and concerns will vary, depending on lots of things, including:

  • when you got your transplant
  • how old they were then
  • how old they are now
  • what's going on with your health now
  • their own personality.

Thinking about the transplant, and your health, isn't a conversation that happens once—new questions and topics will continue to crop up over time.

Most experts agree that it is important to answer your child's questions honestly, without reading too much into them or giving more information than asked for. If you are looking for more support in talking with your child, you may be able to check in with your transplant social worker, transplant coordinator, your child's teacher, pediatrician, or a school counselor. As a rule of thumb, your child's needs change as they age. If your child is:

  • Preschool-age: keep it concrete, simple.
  • School-age: answer simply at first and offer more detail if they ask follow-up questions. It's ok to ask afterwards "did I answer your question ok? Do you have other questions?"
  • A teenager: Thank them more explicitly for asking. Acknowledge their areas of expertise. Suggest that you could learn more about something together.

Your child's questions may surprise you, partly because they may ask them in a public restroom, or when you are late for church. Some educators call these “magic learning moments,” and suggest that if possible we jump on them. Little kids don't know when it is a good time to talk. Teens may be asserting some power in when they are open with you, and these moments may be few and far between. When in this situation, I suggest you find a way to sit down, make eye contact, express pleasure they asked, and offer a quick, open answer. If they're little, that may do it. If they're school-age or older, ask them when you could talk about it again.

Your child's questions may also surprise you because kids' questions get right to the core. They may get you thinking about your own transplant adjustment, and changing family role, in a new way. They may get you searching for accurate information yourself.

Some background framing:

  • It's okay not to have all the answers. It's okay to say the question got you thinking, too. Offer an initial answer, maybe along the lines of, “I've got a lot of feelings about that, too—I was scared at first, and now I'm getting used to it,” or “this is how I think it works, but let's learn more about that together.”
  • Some questions may get repeated.
  • Your child may have different ideas about privacy than you do. Your preschooler may want to show off his new knowledge, so it helps to sort out your own comfort level with that and help him learn some guidelines. Conversely, your teen may want to hold some information close and be uncomfortable with community events, for example.
  • You child may ask some questions of other trusted adults instead of you. It's normal if this hurts your feelings a little. But your child may want to protect you from some of their fears. It is a blessing they are talking to somebody.

The following questions are a few examples of concerns a child might have. The questions included may also help you begin a discussion with the child about life after transplant. The answers provided are just examples. Naturally, the words you use are up to you and depend on your child's age and understanding.

Can't we be done with transplant already? I'm sick of it!

It's true that I will need to care for myself, and the transplant, for a long time. How much time that takes will change. There are lots of things I can do to try to stay healthy. There's a whole team of people at the transplant center and at my doctor's office to help me with that. We can do some things as a family to make it better too, and to figure out how to fit the transplant into everything else that's important, like your school, grandma's birthday party, or my job.

We need to let everyone have his/her own way of handling the worry. Some people may be angry, some sad, some may want to be by themselves, and some people may want to talk about it. Each person has his/her own way, and each way is okay.

Why do you have to go to the doctor? Why do you have to get blood tests?

The doctor and the blood tests help track how my new organ is doing. That helps me take good care of myself so I can stay as healthy as possible.

Why do you have to take medicine?

To help the new organ keep working, I must take medication every day. (At this point, especially for older kids, you may want to share the tools you use to keep track of your medicine—when to take it, what it is…the list on the fridge, the meds box, the alarm on your watch—whatever helps you stay organized.)

What does your medicine do?

In a funny way, transplant is all about tricking my body into not noticing there's a new organ in there. Otherwise, my body might treat the new organ like a germ. My transplant medicine helps ‘fool' my body into not noticing there's someone else's organ in there!

Why are you (insert a potentially embarrassing side effect here: always in the bathroom/ getting a rash/ growing funny hair/ etc)?

Remember, kids ask the questions adults have learned to studiously avoid!

My medicine has what are sometimes called ‘side effects'. While my medicine works to keep my transplant going, it may also make my tummy upset, or give me a rash. Sometimes the doctor can then give me other medicine to help with that.

Will you have to go back to the hospital?

I will have to see my doctor often to have my blood checked. If there is a problem, I might have to go back to the hospital for a few days to fix the problem.

Why do so many things have to change in our lives?

Because of my illness, there may be times I can't do all of the things I would like to do. We need to work together to keep our family running smoothly. Each of us will have to learn new jobs, and each of us can do things to help. Like helping with the pets, cutting the grass, bringing in the groceries, or staying with a neighbor sometimes after school if I can't be there because of a doctor's appointment.

Are you going to die?

I'm not going to die tomorrow or anytime soon, and I hope I will live for a very long time. But everyone dies sometime, so yes, sometime I will die. I am making changes in the way I live, to help me stay alive longer. (If they ask follow-up questions, you may want to say something like “I may not live as long as if I did not have this disease”.)

Why are you in a bad mood?

If I am in a bad mood sometimes, it is not your fault. It does not mean that I don't love you anymore. There are many reasons why I may feel "down" sometimes, or am distracted.

  • I am worried about my health. I worry about the future.
  • I don't feel good. I'm sick.
  • I don't feel like I used to. I want to do everything that I used to be able to do, but now I can't.
  • Things bother me more than they used to. I have lots of worries, and don't feel well enough to think about all of them.
  • I feel angry, or frustrated, or sad, or scared when I think about being sick.
  • Often when I snap at you, or seem impatient or angry, I'm not angry at you. I just don't have as much patience as I used to, or as much as I wish I had now.