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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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There are many ways you can help children and their families get the care they need.
At Boston Children's Hospital, experts in our Orthopedic Center's Hand and Orthopedic Upper Extremity Program provides comprehensive care—including evaluation, diagnosis, consultation, surgery, non-surgical therapies and follow-up care.
Not all children need surgery for a cleft hand—it may not be necessary if your child has good use of her hand and the deformity is not too severe. However, if your child's hand has significant functional or cosmetic problems, her doctor may recommend surgery.
Surgeons will perform surgery early in a child's life if the cleft hand's deformities are progressive (will worsen over time)—such as syndactyly (joining) between the thumb and index finger, or transverse bones between the digits. If the cleft hand doesn't have progressive deformities, surgery can take place when the child is 1 or 2 years old.
If surgery is needed to repair cleft hand, there are many different surgical approaches available. The timing and sequence of procedures will vary from child to child, but in general, the first procedure is usually done when, or after, a child is 1 year old. In general, the goals of surgery are:
• close the cleft and make sure your child can use his hand effective
• create a good working space between his thumb and index finger to allow for pinch and fine motor function
• reorganize the skin and soft tissue
• stabilize or transfer the bones of the hand
• correct any deformities of the fingers or thumb
For about four to six weeks after surgery, your baby will be in a long-arm cast stabilized by pins. After this time, her doctor can removed the cast and pins in the office setting without sedation.
For several weeks, your child will wear a splint to bed to maintain alignment and help with scar reduction. She'll receive occupational therapy until she achieves supple active motion and developmentally appropriate use of her hand, during which time her doctor will monitor her progress monthly. The doctor will then follow her yearly until she stops growing (reaches skeletal maturity).
The quality of the reconstruction of your child's thumb and digits depends to a large extent on how severe her original malformation was. As a result of surgery, you can expect that she will have active, functional grasp, pinch and release, and an improvement in the aesthetics of her hand. The alignment of her fingers should also improve.
As your child grows, some gaps and deformities that were reconstructed by her original surgery can recur. In these cases, additional procedures may be needed.
At Boston Children's Hospital, we understand that a hospital visit can be difficult, and sometimes overwhelming. So, we offer many amenities to make your child's—and your own—hospital experience as pleasant as possible. Visit the Hale Family Center for Families for all you need to know about:
• getting to Boston Children's
• navigating the hospital experience
• resources that are available for your family
In particular, we understand that you may have a lot of questions when your child is diagnosed with cleft hand. Will this affect my child long term? Will she be able to enjoy regular activities? Children's can connect you with extensive resources to help you and your family through this stressful time, including:
• patient education: From doctor's appointments to physical therapy and recovery, our nurses and physical
therapists will be on hand to walk you through your child's treatment and help answer any questions you may
have—Why will my child need surgery? Are there non-surgical options? How long will her recovery take? How
should we manage home exercises and physical therapy? We'll help you coordinate and continue the care and
support your child received while at Boston Children's.
• parent-to-parent: Want to talk with someone whose child has been treated for cleft hand? We can often put you in
touch with other families who've been through the same process that you and your child are facing, and who will
share their experiences.
• faith-based support: If you're in need of spiritual support, we'll connect you with the Boston Children's chaplaincy.
Our program includes nearly a dozen clergy—representing Protestant, Jewish, Muslim, Roman Catholic and other
faith traditions—who will listen to you, pray with you and help you observe your own faith practices during your
• social work: Our social workers and mental health clinicians have helped many families in your situation. We can
offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping
with illness and dealing with financial difficulties.
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.”