The decision to have a heart transplant requires much thought and expert medical consultation. There are several steps that need to be taken before surgery to determine if it is the right choice for your child and family.
A heart transplant assessment helps the medical team decide if a transplant is possible, the best treatment, and the right option for your child. The assessment involves a number of different medical tests as well as sharing medical history with the transplant team. In addition to assessing if your child is physically ready for transplant, there will be meetings with other healthcare professionals to help ensure that your child is emotionally ready as well.
The transplant team is comprised of a transplant cardiologist, transplant surgeon, pathologist, transplant nurse, pharmacist, social worker, financial coordinator, physiotherapist, occupational therapist, dietician, child life specialist, psychologist, psychiatrist, palliative care, chaplain and/or pastoral care team. This team approach is comprehensive and ensures that all treatment options are discussed to determine the best course of treatment for your child.
If the team recommends a heart transplant, they will decide how quickly your child needs it and when to list.
Listing and Waiting for a Heart
If your child is recommended for transplant, he/she will be added to a national waiting list. Their blood type, weight and height will also be listed. Most countries have a system of meeting the needs of the sickest children first. In the United States, the United Network for Organ Sharing (UNOS) is an organization that coordinates U.S. organ transplant activities. According to UNOS, status 1A indicates the most urgent need, followed by 1B, 2, and finally 7 which temporary places the patient on an inactive list.
When matching a donor with a recipient, the following factors are taken into consideration:
There is no way to predict how long your child will need to wait; it could take days, months or years. Depending on the child’s medical situation, they may wait for a heart at home or may need to wait at the hospital.
Waiting for a heart can be an emotional and anxious time for both child and parent. It is important for families to find a healthy balance and get the help they need. Your transplant team can provide information and support with this.
To learn more about before the transplant, click here.