The first step in the heart transplant process is determining whether or not a child is an appropriate and suitable candidate for heart transplantation.
This can be a very complicated issue and members of the transplant team will discuss this in great detail with the child and their family. A large number of tests need to be done to determine whether heart transplantation the the best option for any particular patient. These tests are either done as an inpatient or an outpatient depending upon how sick the cihld is. Usually it is necessary to do a cardiac catheterization. These tests may take several days to perform.
Once all the data is gathered, the transplant selection group determines whether heart transplantation is the best treatment for the patient.
Once it is established that the child is a good transplant candidate, he or she is then listed on the national UNOS organ waiting list. Depending on the severity of the illness and the degree of medical therapy necessary, patients are listed as Status 1 A ( most ill) Status 1 B or Status 2. Waiting times for donor hearts vary between status 1 and status 2 patients.
Once the heart transplantation is performed, the child usually is hospitalized for one to three weeks. After dismissal from the hospital the child will remain in Rochester as an outpatient for a total of three months. During this three-month period, they are evaluated initially three times a week and subsequently twice a week and finally once a week until they are ready to leave Rochester and return to their hometown.
During that three month period of time, numerous tests are performed to be certain that rejection of the heart is not occurring. Once the child leaves Rochester to return home, they return to Rochester and are evaluated every month for 6-12 months. After one year, the frequency of return visits to Rochester depends upon the situation but may be as infrequent as once every six months.
Twelve hours after Rylie Weigel was born in Thief River Falls, Minn., she started turning blue in the face and had difficulty breathing. She had a severe form of HLHS and would needed a heart transplant.
Read Rylie's story.
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