How Family Members Cope

• Explaining a Transplant to a Child’s Siblings
• Advice for Parents
• Fear of the Unknown
• How Siblings May be Affected by a Transplant
• Effects of the Illness
   

Explaining a Transplant to a Child’s Siblings

I think that the big questions that families ask us are, number one, how to tell their child about transplant— how to explain this to them. They tell me they don’t know what kinds of words to use, and don’t know how to answer their children’s questions. Number two, they want to know if this is a cure or just a fix for a short time. Will their child have a longer life? Will they be able to do the things they normally did before? Can they play sports? Can they be in large crowds of people? And will they need a new heart transplant after a while? Is this something that they might have to go through again? I think that those are big issues for parents. They also really want to know how to tell the siblings at home— how to let the brothers and sisters know that this is happening, and how to explain it. Before I talk to parents about what to tell siblings, there is certain information I find out, like how old the children are and how much they know so far. Some kids don’t even really know that the child who is in the hospital is that sick— the parents never knew what to tell them so they never gave them too much information at all. We also need to find out if the child has been in to the hospital to visit, to get an idea of what their understanding is of what is presently happening.

I think that it’s very important that everyone in a family get the same information. You don’t want to tell one child one thing and then another child another thing because eventually they’re going to get together. Of course if there is a two-year-old and a fifteen-year-old, they are going to have very different information about what’s happening. But I think it doesn’t work to think that because one child worries too much and the other child doesn’t worry so much, you should give them different information. I think that everyone has got to be on the same page, including in-laws and cousins and other relatives. Everyone should know the same facts, explained in the same way, because you don’t want people getting together and saying, “Well, I heard this and I don’t understand— why did you hear this?” So I think that’s very important. What Child Life has done is that we’ve offered to parents that we can talk to the siblings if that’s something that they would be interested in having us do, and that otherwise we can kind of give them some words to use to explain it. And we make it really concrete for parents. I think it’s important to know that when you sit with a child you wouldn’t say, “Well, your sister is sick, so she needs a new heart.” Because that child could start thinking, “Well, I’m sick,” or “I heard that you were sick too.” So you have to be very concrete and let them know that the child’s heart is very, very sick and that they’ve tried medicines and the medicines aren’t working and that it’s very important that your heart work and that it be strong and healthy. Another way of explaining this to siblings is to start with a frame of reference. You could say, “Do you remember when your sister was not feeling well at all and the doctor said that she was sick, very sick?” So you start to put the story together for them. I think it’s very difficult to sit down and tell a ten-year-old, “You know what? Your sister needs a new heart”- it’s got to come from somewhere. So I think you have to start with the story by saying, “Remember when…” or “Remember how…” and then you put the pieces together for them.

Beth Donegan-Driscoll, Child Life Specialist

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Advice for Parents

I think that the best thing for parents is knowledge and education. You can be overwhelmed with all the information, and I don’t think it’s important to know every last detail, but I think that it is important to know what your child is going through and what they can expect. There are often very difficult discussions, because some of the potential problems are quite serious and quite troublesome. Nevertheless, with information, parents are better prepared to travel through everything. I warn parents that transplant is a bit of a rollercoaster: you can expect the ups and downs and all arounds, and you need to be prepared for them, not only for your own wellbeing, but also to be able to support your child. Children will continue look to their parents for help, support, hope, and guidance.

One thing that I’m always impressed with are the patients themselves: their strength, their determination, their participation – that’s what gets me through this whole ordeal of transplant.

Craig Lillehei, MD, Transplant Surgeon

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Fear of the Unknown

Families sometimes have a lot of fear: fear of the unknown and fear about whether a transplant is even the right decision, especially with the younger kids. With the older kids, parents usually make up their minds and go for it, but with little babies, sometimes parents wonder if it is worth it. Should they do it? How are they going to deal with it afterwards? Are we going to get by until she is twelve and then lose her? The most optimistic parents say, “Here is our time now. We’ll look at that later on.” You never know what type of technology will be found in the future.

Ann Rounseville, LICSW, Heart Transplant Social Worker

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How Siblings May be Affected by a Transplant

Parents often ask how their other children are going to be impacted by this, so we talk about how to address those issues. There are issues about the parents being at the hospital a lot, and giving the patient a lot more attention. Siblings are always concerned about their parents and their transplant sib. They need reassurance and time, and they need to see their sick sibling too, so we have to make sure that we address all of that.

Maureen Jonas, MD, Physician, Liver Transplant Program

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Effects of the Illness

It is often helpful just to have concerns, fears, and frustration recognized and validated. I have found that just asking parents about the effect of the illness on their lives and how they are doing physically, emotionally, socially, spiritually and financially reassures them that it is acceptable and normal to recognize the high “cost” on all these levels of having a sick child.

Roberta Hoffman, LICSW, Kidney Transplant Social Worker

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