When a heart transplant is necessary, you want your child’s care handled by a team of experts who are well trained and experienced. At UI Children’s Hospital you will find a heart transplant team that’s committed to your child’s care before, during, and well after the surgery.
Our multi-disciplinary pediatric transplant team specializes in the care of children. Their care is delivered in a hospital that is child- and family-centered.
Since the program started, more than 50 children have received heart transplants at UI Children’s Hospital. We are Iowa’s only comprehensive pediatric cardiac heart program and now rank among the nation’s best with excellent outcomes for our patients.
Why a Transplant?
Transplantation is one of the best treatment options for children with end-stage heart failure.
Your child will be carefully evaluated by a multidisciplinary team so that the procedure is tailored precisely to his or her condition.
Our care for your child and your family addresses your concerns. Our pediatric cardiologists and surgeons will take the time to explain your child’s condition and the way that a transplanted organ will improve his or her condition. Our specially trained psychologists and social workers will see to it that your child and your family are prepared for making the transition to the new organ and overcoming any barriers to success.
We’ve worked hard to streamline the process for being evaluated and being added to the national transplant waiting list. Our goal is to help our patients get their transplant as quickly as possible. Our record shows that our patients spend fewer months on wait lists than other centers our size.
Preparing for a Transplant
We will work with you to schedule your child for a full day of medical tests, consultations, and educational conferences to determine if transplant is the best option for his or her condition.
Potential heart transplant candidates receive a variety of blood tests and other procedures to provide a clear picture of their health. These precautions—which include tests for liver, lung and kidney function--increase the likelihood of a successful outcome. Blood samples help us assess the function of your child’s body systems, screen for viruses, evidence of cancer, and tissue typing.
Your full day will include meetings with these members of our transplant team:
- Pediatric Transplant Surgeon
- Pediatric Cardiologist
- Clinical Pediatric Psychiatrist
- Pediatric Nutritionist
- Pediatric Dentist
- Pediatric Anesthesiologist
- Transplant Coordinator
- Social Worker
You will meet with a transplant coordinator, who is a registered nurse specializing in organ transplantation. During this meeting, the coordinator will describe all aspects of the transplant process.
You will have ample opportunity to ask questions and discuss your concerns. The transplant coordinator will assist your family through preparation, education, and listing on the donor registry.
A transplant social services representative will meet with your family during the evaluation. The social worker gathers information about coping abilities, support systems, and ability to follow important post-transplant instructions. The social worker provides emotional support and helps you explore appropriate groups and service agencies in your local community.
Approval for Transplantation
When the evaluation is completed, the heart transplant committee will review the results of tests, procedures, and consultations. This committee, which meets weekly, consists of the nurses, pediatric nephrologists, surgeons, social workers, and others who you have met throughout the evaluation process. All members contribute their opinion; and a decision is made with regard to further testing, additional treatment, and when you should be added to the waiting list.
If you are approved for transplantation, you will be placed on the recipient list of the United Network for Organ Sharing (UNOS). Heart recipients are matched to donor according to blood type, tissue type, organ size, and waiting time on the list.
The Transplant Stay at UI Children’s Hospital
The following timeline is representative of the typical heart recipient; no patient will have exactly the same experiences.
Day of Surgery
- Your child will be admitted directly to the Transplant Unit
- Blood samples will be obtained
- A chest x-ray and EKG will be obtained
- An enema will be given to cleanse the bowel
- Your child will go to surgery as quickly as possible after being admitted based on the receipt of the donor organ, the time for crossmatch testing, and the need for dialysis or additional testing before surgery
- Usually lasts 4-6 hours
First Post-Operative Day
- Your child will probably come back directly to the Pediatric Pediatric Intensive Care Unit for a day or two, and will then be transferred to a regular inpatient bed.
- Your child will not be eating or drinking until his or her bowel wakes up from the anesthesia, although he or she will begin taking medications with a few sips of water.
- Your child will have an IV to prevent dehydration and to administer some medications.
- Your child will have a Foley catheter placed in his or her bladder to drain urine. This catheter usually remains in place for at least 4 days to allow the bladder to empty while on pain medications, and so that urine output can be closely monitored.
- Your child will have vital signs monitored hourly in the immediate post-operative period.
- Your child will have blood drawn once a day
- Older children will be assisted in taking a first walk within 12 hours after surgery and will be helped to increase the amount of activity every day to prevent complications such as pneumonia and blood clots.
- Your child will be encouraged to cough and deep breathe to prevent pneumonia.
Second Post-Operative Day to Discharge (usually after 10 to 20 days)
- Your child will probably begin drinking clear liquids at mealtimes by Post-Op Day 2, and may even be eating age-appropriate solid foods if they are tolerated.
- You and your child will be taught about the new medications, and signs and symptoms of both organ rejection and infection.
- A pediatric transplant coordinator nurse will speak with you to arrange for local laboratory blood work and further follow-up.
- Your child will have a first follow-up appointment at the Pediatric Specialty Clinic approximately one week after discharge. You will be given the date and time of this appointment before your child is discharged.
After Your Child’s Transplant
For the first six months after surgery your child’s health will be monitored closely by the transplant doctors and transplant coordinator. You will be expected to keep a daily record for the first month after surgery. This record should include the following information:
Because of the frequency of check ups during this time, you and your child may need to stay close to Iowa City for the first three months.
Throughout his or her life, your child’s check ups will include blood tests, x-rays, and tissue biopsies.
Your child’s pediatric specialist will schedule frequent biopsies of heart tissue within the first year to check to see that your child’s body is not rejecting the new heart. These biopsies will be less frequent in future years.
Your child will take drugs for the rest of his or her life to prevent the body from rejecting the transplanted heart.
Normal recovery from a heart transplant can last up to six months. Your child’s pediatric specialist will advise you on when your child can return to normal activities based on your child’s health.