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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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Living with a transplant is a lifetime journey and each child and every transplant is different. Most children go to school, participate in sports, work in all types of jobs and professions and generally lead full and happy lives.
In the beginning, the transplant team wants to see the child frequently for follow-up visits, initially once or twice per week in the Liver Transplant Clinic. Generally, after a few visits, this schedule changes to once per week then every other week. It gradually changes to once a month and then every three to six months.
Our goal after transplant is to return the child and family to as normal a routine as possible. This takes time but will remain our goal. Typically, children return to school about six to eight weeks following surgery, but this can vary on an individual basis.
We want and expect liver transplant recipients to live a fulfilling and productive life. Before the transplant, a child may not have been able to be active (or didn’t feel like being active). However, post-transplant he or she will gradually be able to increase activity.
Children who have had a transplant must avoid rough play and contact sports for the first two months. The transplant team provides specific instructions and recommendations for sporting activities and gym classes.
To prevent rejection following surgery, a transplant recipient will need to take several medications daily for the rest of his or her life. A major reason for rejection is non-compliance (the medical term for not taking medications properly). Teenagers, both because they are seeking more control of their lives and because they don't like some of the usually temporary physical effects caused by the drugs, have a tendency to skip their medications.
An episode of rejection can require several visits to the clinic for steroid pulses, or it may lead to a hospital stay for more aggressive anti-rejection medicine. Repeated non-compliance can lead to organ rejection.
We work with teenagers as they begin taking responsibility for their own medications and transition into adulthood. The key is finding what works for each individual to promote partnership and ownership.
Healthy eating habits can make a big difference in a transplant recipient’s long-term health. For the first few weeks following transplant, the child needs extra nutrition to help his or her body heal. Extra calories and protein help the body heal the wound, fight infection and gain back any weight that may have been lost.
Six to 12 weeks after surgery, the healing process is just about complete, so the calorie and protein needs are not as high. A child’s appetite may improve—both because he or she is feeling better with the new organ and because some of the medications can cause a hungry feeling almost all of the time. It is important to control eating to avoid gaining too much weight and avoid foods that are high in sugar or fat. Our nutritionist works with families in the hospital to plan menus and answer questions.
Our goal is to allow a child to continue to grow and develop similarly to other children of the same age and to participate in age-appropriate activities. We try to keep restrictions to a minimum and to adapt their medical needs to a child's normal schedule and activities.
A child's physical growth is checked frequently, and we make suggestions about diet changes or adjusting calories as needed. We want the recipient to grow along his or her own growth curve following transplant.
We also carefully observe a child's development at regular intervals and may make suggestions for additional services (such as early intervention or physical therapy) to enhance his or her development. Although transplant makes many extra demands on children (hospital stays, blood tests, clinic visits, medicines), most transplant recipients seem to adapt fairly well with our help and support, and perhaps most importantly, their families’ love, concern and support for them.
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.”