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Boston Children's has launched the world's 1st program dedicated to offering hand transplants to children who qualify.
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Once you’ve been notified that a donor heart has been found, things move very quickly. Our team will make sure that you and your family are comfortable and informed. It’s normal to be nervous, but you can rest assured that your child is in good hands with us.
What happens when we arrive at the hospital?
When you arrive at the hospital, you’ll go directly to the Inpatient Unit. Here, members of the transplant team (including a cardiac anesthesiologist) will perform a physical exam and run some tests to make sure your child is ready to go to the operating room.
While this preparation is going on, a surgical team will be transporting the donor heart to Children’s Hospital Boston. The time of your child’s operation is planned to match the team's arrival back to the hospital.
What happens in the operating room?
The anesthesiologist will give your child anesthesia, so that he falls asleep. His chest will be thoroughly cleaned with a special cleansing solution to minimize the possibility of infection.
Heart transplant surgery aided by a heart/lung bypass machine.
Next, the transplant surgeon will open up your child’s chest and connect him to a heart-lung bypass machine, to keep oxygen-rich blood flowing through his body. The surgeon will remove the diseased heart, put the donor heart in its place, and reconnect the blood vessels. Usually, the new heart begins to beat once blood flow is restored, but sometimes an electric shock is needed to help it start beating.
How long will the transplant operation take?
Each child is different, but a heart transplant operation usually takes around four to six hours.
What happens after surgery?
After the surgery, your child will go to the cardiac intensive care unit (CICU) to be monitored closely. After his condition is stable, your family is welcome to visit. Read more about the CICU.
While your child is in the CICU, members of the transplant team will educate you and your family on all aspects of caring for your child after his operation. This will include information about medications, activity, follow-up, diet and any other specific instructions.
After the transplant, your child’s team will want to keep a close eye on him through follow-up visits to make sure that everything is going well. These visits might include:
These visits are essential to make sure your child’s medicine is at the right dosage, catch and treat any complications that might arise and make sure that your family and your child’s team remain in touch. While your child’s transplant team will tell you how often they will need to see your child, many post-transplant patients are seen:
Once your child is stable, follow-up visits will occur between two and four times per year.
How can I help keep my child safe after the transplant?
We understand that you will want to do everything possible to protect your child and his new heart, and there are some steps you can take to minimize the risk of infection.
Coping and support
We understand how disruptive and frightening a heart transplant can be - not only for your child, but for your whole family. From your first visit, you’ll work with a team of professionals who are committed to supporting you.
Patient education: Our nurses will be on hand to walk you through your child’s treatment and help answer any questions you may have. They will also reach out to you by phone, continuing the care and support you received while at Children’s.
Parent to parent: Want to talk with someone whose child has had a heart transplant? We may be able to put you in touch with other families who can share their experience.
Faith-based support: If you are in need of spiritual support, we will help connect you with the Children’s chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.
Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child’s condition, stresses relating to waiting for an organ, and dealing with financial difficulties.
And on our For Patients and Families site, you can read all you need to know about:
At age 11, Ronald (R.J.) Agostinelli was diagnosed with acute lymphoblastic leukemia, a cancer of the white blood cells. He missed seven months of elementary school while having chemotherapy. Here, R.J. talks about what it was like returning to his class after a long absence.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”