Finding an organ
Organs for transplant may come from living donors in the case of a kidney or liver transplant. Other times, and at all times in cases of heart transplant, organs for transplant come from adult or child organ donors who have not survived, or will not survive, a critical illness or injury. Transplantation of these organs is called a cadaveric transplant.
Adult donors previously would have agreed to donate their organs under such circumstances. When the donor organ comes from a child, the parents have agreed to donate the organ to save another child’s life.
United Network of Organ Sharing (UNOS) is the organization that determines how donor organs will be distributed for a number of types of transplants, including cornea, heart, kidney, liver, lung, and pancreas.
Hospitals and medical centers across the country communicate with UNOS about their patients in need of organ transplants. The organization keeps a nationwide list of those requiring a transplant so that when a donor organ becomes available, it can match the organ with patients waiting for transplants.
UNOS allocates available organs based on the severity of the patients’ illnesses, with organs distributed to the patients most urgently in need of transplant.
Criteria have been developed to ensure that the medical need is determined and the organs are allocated fairly. When UNOS learns that patients need transplants, the potential transplant candidates are placed on a waiting list and given status codes that indicate the severity of their conditions. Those codes determine the patient’s place on the list. Those with the greatest need are placed higher and are given the highest priority when donor organs become available.
If it’s been determined that your child needs a heart transplant, the team informs UNOS so your child’s name can be placed on the list, and follows up to keep the organization informed about any changes in your child’s health status.
Each time a donor heart becomes available, a computer filters the list of people waiting for transplant and eliminates those who are not good matches for the organ. The person highest on the list of potential matches is then considered for transplant. Placement at the top of the list isn’t always a guarantee that the patient and heart will be a good match. Sometimes, even though a patient’s need may be greatest, the size of the donor organ may not be a good fit or the organ may be located too far away geographically.
The evaluation process
Before being placed on the United Network of Organ Sharing (UNOS) transplant list, your child will need a thorough evaluation, which includes extensive testing to help assess the urgency of the need for a transplant and to ensure that your child ultimately receives a donor heart that will be a good match.
The tests will evaluate your child’s overall health; organ function, including the liver, heart, kidneys, and lungs; and nutritional status. In addition, the assessment will include a social and psychological evaluation of the child (if the child is old enough to participate) and the family.
If your child’s need for a transplant is urgent, the team may perform the pre- transplant evaluation while your child is already in the hospital. More often, your child will be evaluated in a hospital outpatient clinic over a period of a few days to a few weeks. You and your child will meet as needed with the core transplant team and consultative services. As the time for the evaluation approaches, the staff will be in touch with you to provide more information.
To prepare for the pre-transplant evaluation, gather the documents concerning your child’s condition and treatment that will be needed by the staff, including:
- All pertinent medical records, including X-rays and other studies
- Immunization records
- Insurance information
You will also want to bring something to help your child feel more comfortable, such as a favorite toy, or stuffed animal.
Your child’s physician and the transplant team will determine which tests may be necessary to give them a complete understanding of your child’s medical condition and readiness for transplant. These may include:
- Urine tests to check for infection
- Blood tests that provide information about general health and specific medical conditions
- Imaging studies, including X-rays, ultrasound, MRIs, and CT scans
- An echocardiogram that uses sound waves to produce a moving picture of the heart and heart valves that assesses their structure and function
- An electrocardiogram (ECG or EKG) to measure the heart’s electrical activity and reveal the presence of abnormal heart rhythms (arrhythmias) or damage to the heart muscle
- Cardiac catheterization, which allows the physician to view your child’s heart and blood vessels by guiding a catheter (a small, thin tube) through a vein or artery into the heart. During the process, an iodine compound (a colorless, liquid dye) is delivered through the catheter and its passage through the heart can be seen on moving X-ray images.
- A heart biopsy, the collection of a small sample of heart tissue that will be examined under a microscope
- Diagnostic tests
- Abdominal ultrasound
- Liver biopsy
- Nutritional assessments
In addition to these tests and procedures, a number of blood tests may be necessary to provide information that will help the doctors increase the odds that your child’s body will not reject a donor organ. Among these are:
- Tests of vital organs, including the kidneys and liver
- Viral studies to determine if your child has antibodies to viruses such as cytomegalovirus (CMV) that might increase the possibility that the donor heart will be rejected by the body.
- Blood typing is performed to be certain that blood received during a transfusion, or blood contained within a donor heart, is compatible with your child’s blood type so that it will not produce an allergic reaction. Everyone has a particular blood type from among the following: A+, A-, B+, B-, AB+, AB-, 0+, or 0-. To help prevent allergic reactions, tests will determine your child’s blood type so it can be matched with a donor. Matching your child’s blood type with the donor’s blood type helps prevent allergic reactions.
Following the evaluation, the transplant team will determine whether your child may be a candidate for heart transplantation, based on medical history, interviews, physical examination, and the results of diagnostic tests. If the team concludes that your child is a good candidate for transplant, it will add you to the national waiting list for a donor heart and within ten days will notify you that your child has been added.
While your child is on the waiting list, it’s important that you make every effort to see that he eats a nutritious diet, gets plenty of sleep, and engages in regular exercise to the extent possible. Be sure to communicate any changes in your child’s health to your child’s physician and the transplant team.
The waiting period
You want your child to be well as quickly as possible, and if an organ is not available immediately or quickly, you may wonder why it’s necessary to wait and how long it may take. The demand for transplants varies each year, as does the number of donor organs available. If you’d like to learn how many children are waiting for a transplant and how many have had transplants this year, visit the website of the United Network for Organ Sharing (UNOS).
A donor heart may be available for your child within a few days or weeks. It’s also possible that it could take months or years. But be assured that while on the list, your child will be carefully monitored by the physician and the transplant team. And to help you during the interim, various resources and support groups are available.
It may help to understand why your child must wait for a donor heart. A kidney transplant may be able to be performed sooner because a living donor can offer a kidney to a person in need and both the donor and the recipient can survive with only one kidney. And thanks to new techniques, a person who needs a liver transplant can thrive if given only a portion of an organ, so a live donor can provide a liver segment. But in cases of a heart transplant, it’s not possible to receive an organ from a live donor because humans require an entire heart to survive. Therefore, donor hearts become available only after the death of individuals who had declared themselves organ donors so that others might live.
Another reason your child may have to wait for a transplant is because a donor heart must be the right size. An infant’s chest, for example, is too small to hold an adult donor heart.
The waiting period can be deeply unsettling for you and your child. At the same time that you look forward to the lifesaving treatment on the horizon, you also know it might take years or that a heart may not come at all. The uncertainty, as you’re still trying to come to terms with the loss of a healthy future for your child, can feel overwhelming.
Social workers and child life specialists at Children’s Health℠ can help you, your child and your family through this difficult time. They’re there to listen, provide resources, and to help you solve problems. In some cases you may need to turn to them for support for feelings of grief, both for the loss of your healthy child, and also for the family of the deceased individual whose heart may allow your child to live. It’s not uncommon to experience anger, depression, and even guilt, but social workers and child life specialists can help you cope with the emotions that may arise.
When an organ becomes available
How you will be notified about an available donor heart for your child depends on the transplant teams’ specific guidelines. Most likely you will be called or paged to let you know a heart is available. Once you’ve been contacted, you will be expected to bring your child to the hospital right away to be prepared for the transplant. Since this can occur at any time once your child has been placed on the list, it’s a good idea to be ready at all times with extra clothing for you and your child, all the pertinent medical records, and familiar items, such as a stuffed toy for your child’s comfort.