Question 1

What are the benefits of talking to your child about their transplant?

Accepted Answer

Children coming to the hospital usually have many questions and concerns, even if they do not know how to express them. Many parents want to protect their children by not telling them things that could be scary. Your child is more afraid when he or she does not know what is happening. Before your child comes to the hospital, give them as much honest information about their condition as you think they can understand.
 
Benefits of talking to your child about his or her transplant include:
 • It can build trust in your child and hospital staff.
 • Your child will know what to expect.
 • Honest information corrects false ideas about transplants.
 • It can help your child cooperate during treatment.
 • It can help give your child get a sense of control.
 • Your child can learn how to get through hard situations.
Encourage your child to trust the medical staff. It is important that children believe that we are all on the same team. It may be hard to tell your child about transplant as children often know when something is wrong. Think about your child’s age when you are choosing words to explain the transplant. 
 
If your child is very anxious, or you need help explaining the transplant in appropriate terms, you may wish to speak to a psychologist, child life specialist, or social worker. Your transplant team wants your family to be successful, so don’t be afraid to ask them for help or a referral to someone who might be able to provide extra support to your family.
 
You also need to educate and prepare yourself, so you are not anxious, as children will reflect these feelings.

Question 2

Tips for Talking to Your Child about Transplant

Accepted Answer

• Tell your child what their incision (opening for surgery) or scar will look like.
 • If your child is especially anxious, consider drawing a picture of an incision on a doll or on their abdomen.
 • Find books to read about going to the hospital, your child's medical condition, or other related topics. Reading together and discussing the book will help to relieve anxiety.
 • Tell your child they will have some pain, but they can ask for medicine to make them feel better. A child is often anxious about surgery because of their fear of pain.
 • Inform your child that a special doctor will give them medicine which will put them in a very deep sleep so they will not feel anything during the operation, once the operation is complete, they will wake up.
 • Tell them the doctors and nurses are there to help make them feel better and are on their side.
 • Check with your child to make sure they understand what will happen. Ask them to explain in their own words what they think will happen or what could happen.
 • Explain the problem. Explain at your child's level of understanding. As you explain, avoid harsh phrases such as "cut into you," or "staple you together," rather, explain the doctor is going to fix the problem by giving you new parts and using gentler language.
 • Children learn from doing, seeing, and hearing things many times. You may need to explain the transplant multiple times for them to fully understand. Do not get frustrated by repeated questions or confusion.
 • Check to see if your transplant center offers a tour of the hospital for kids. Often times this will be offered through child life services and is helpful to familiarize your child with the hospital and help to reduce anxiety. 
 • Make sure to tell your child that a transplant is no one’s fault. Many children believe that a transplant is caused by something they did, said, or thought and feel it is their punishment for "being bad."

Question 3

What happens when my child receives the call for transplant?

Accepted Answer

When an organ becomes available and suitable for your child, you will receive a phone call. Timing is essential, and your child's coordinator will tell you when you need to be at the transplant center. After arriving at the hospital, your team will admit your child. 
 
The preoperative testing consists of a chest X-ray, EKG, comprehensive lab work, and any other testing your child's particular transplant center may require. When appropriate, your team will transport your child to the operating room. The support staff will direct you and your family to a waiting area and provide periodic updates while waiting for your child's surgery to be completed.

Pediatric: The Call and Transplant

Pediatric: The Call and
Transplant