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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.
We understand that it can be upsetting to learn that your child has short bowl syndrome, and we look at the diagnosis as the very first step in determining the best treatment plan. Our physicians are focused on family-centered care: From your first visit, you'll work with a team of professionals who are committed to supporting all of your family's physical and psychosocial needs.
Many children with SBS can be kept healthy with medication and nutritional support, which may be delivered at home or at the hospital. If your child is fed through an IV, there is a risk of infection from the line used to connect her vein to the feeding tube. Your child's doctors will tell you what signs to watch for.
Since your child's intestines aren't able to absorb the nutrients her body needs, she may be able to get those nutrients through either parenteral nutrition (PN) or enteral nutrition (EN).
Parenteral nutrition (PN)
With PN, a special nutritional formula is delivered directly into your child's bloodstream through an IV (intravenous feeding). This formula is carefully developed by your child's registered dietician and calibrated to her body's precise energy needs. Delivering nutrients straight to your child's bloodstream means that it can bypass her digestive system altogether.
Most children requiring PN are given the solution over the course of 12 to 24 hours on a daily basis. If your child requires PN for longer-term support, we'll gradually decrease the length of each session.
Enteral nutrition (EN)
If your child is receiving EN, a special nutritional formula through a tube, also sometimes known as “tube feeding,” delivers nutrients she needs. There are two ways we feed children through EN:
EN can be used to prepare the support your child's intestine while recovering from a surgical procedure.
Our specialists in the Center for Advanced Intestinal Rehabilitation will support your child to meet their nutritional needs.
Your child's doctor might prescribe medications to help manage her SBS and supplement her nutritional intake. Some of these might include:
imodium - used to control diarrhea by giving your small intestines more time to absorb water and nutrients
ursodeoxycholic acid - a naturally-occurring bile acid that is used to dissolve and prevent cholesterol gallstones and to treat primary biliary cirrhosis, a disease of the liver
acid blocking agents - including H2 blocker and proton-pump inhibitors
vitamin supplements - either multivitamins or single nutrient supplements
oral antibiotics - to prevent or treat small bowel bacterial overgrowth
Sometimes it's possible to surgically reshape the small intestine to increase the surface area of the intestines and/or prolong the amount of time it takes for food to move through, giving the intestines more time to extract nutrients.
Boston Children's Hospital physicians Heung Bae Kim, MD, surgical director of the Pediatric Transplant Center, and Tom Jaksic, MD, PhD, surgical director of CAIR, developed an innovative surgical procedure called serial transverse enteroplasty (STEP). The STEP procedure reshapes the small intestine in order to:
Learn more about the STEP procedure.
Many children do quite well with intravenous feedings, but sometimes complications arise that make it no longer an option. In this case, your child might be a candidate for an intestinal transplant. There are a few different types of intestinal transplants, including:
Learn more about intestinal/multivisceral transplants.
Our healthcare team will monitor your child carefully – whether she's here at the hospital or coming in for regular follow-up visits - to determine how well her body is responding treatment for SBS. And please remember that we're always here to answer any questions you might have.
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.”