The first step in treating your child is forming an accurate and complete diagnosis.
If doctors suspect an intestinal
obstruction after your baby was born, they will run tests to see whether there is an obstruction, and if so, determine its location. These diagnostic tests may include: o An x-ray and/or ultrasound of your babys abdomen can create images of his intestines that may show an obstruction. Or the doctors may give your child barium, a chalky liquid that coats the inside of your childs organs and lets certain blockages and narrowing appear on an x-ray. o To examine the upper parts of the small intestines, your child will swallow the barium. This is known as an upper GI (gastrointestinal) test, and is also sometimes called a barium swallow. o For the lower parts of the small intestine, your child will be given barium through an enema. This is called a lower GI test, or a barium enema. Doctors may also perform imaging studies of your childs heart and kidneys to check for the anomalies that sometimes accompany intestinal obstructions. We understand that it can be very upsetting to learn that your baby was born with an intestinal obstruction. We look at the diagnosis as the very first step in determining the best treatment plan for your child. Here's how we can help your child: 1. At the Center for Advanced Intestinal Rehabilitation at Boston Children's Hospital, we have the latest innovations and most up-to-date clinical information at our disposal to ensure the best possible outcome for your baby. 2. 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. Surgery Surgery is often the best option for treating intestinal obstructions. Our surgeons are specialized pediatric surgeons with lots of experience working with newborns. What happens during surgery? First, your baby's surgery team will make sure that he is stable enough for surgery, and continue to monitor his breathing, body temperature, blood pressure, fluids and other vital signs throughout the surgery. Next, we'll give your baby medicine to help him sleep. Depending on the location of the obstruction in your baby's intestine, he may have a bloated abdomen. If this is the case, the doctor will pass a thin tube down his mouth or nose down into his stomach to remove the contents and relieve the pressure. Then the surgeon will make an incision in your baby's abdomen, and remove the affected part of the intestine, taking care to leave as much of your baby's healthy intestine in place as possible. Then she will reconnect your baby's intestines. What happens after surgery? After surgery, your baby may receive nutrition (a special, easily digested formula) through an IV, and our team will monitor him carefully to assess how well his intestines are healing. When the time is right, we'll transition him to fewer IV feedings and more oral or tube feedings, with the goal of weaning him off of IV feedings completely. How long will this take? Unfortunately, there's no way to know in advance. This depends on how much of your baby's small intestines his surgeons had to remove, and how well the remaining intestines are working. Some babies are able to leave the hospital in a week, other babies developshort bowel syndrome and might stay on IV feedings for years. Sometimes too, babies will progress from the IV feedings to tube feedings. Treatments for small bowel syndrome include a groundbreaking surgical procedure developed by Children's doctors and intestinal transplant. Follow up Your child's healthcare team will monitor your child carefully whether he's here at the hospital or coming in for regular follow-up visits - to determine how well his respond after treatment. And please remember that we're always here to answer any questions you might have.
Coping and support No parent wants her child to be ill, and it's important to remember that you and your family aren't alone. Many families have been down this path, and there's a lot of support available here at Children's for you and your family. Here are some of the ways we can help: Patient education: From the office visit to pre-op to the recovery room, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have How long will I be separated from my child during surgery? What will the operating room be like? 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 been treated for intestinal atresia or stenosis? We can put you in touch with other families who have been through similar experiences and can share with you their experience at Children's. 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: Our clinical social workers have helped many other families in your situation. Your social worker 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.
A new surgery Problem: The small intestine is a very important part of the digestive tract its where we absorb most of the nutrients from the food we eat. But sometimes children may not be able to absorb all the nutrients their growing bodies require. This could happen because their intestines dont work as they should, or because they dont have enough small intestine, often as the result of surgery to correct congenital defects including intestinal atresia and stenosis. When the child cant absorb enough nutrition from her short intestines to meet her nutritional requirements, she has short bowel syndrome and is at risk for serious malnutrition, with all of its complications. If a child doesnt have enough small intestine, the remaining part tries to fix the problem on its own. It puffs up like a balloon, creating more surface area to draw in nutrients, just as we might set out more buckets if we wanted to collect more rainwater. But this has an unfortunate side effect: the wider the intestine, the longer it takes for the body to move nutrients through it. (Imagine holding a tube with water flowing through it. Now imagine squeezing the tube the water flows faster.) More time in the intestines means more time for the bacteria that would normally be swept promptly along to multiply, increasing your childs chance of infection. Solution: Childrens physicians Heung Bae Kim, MD, surgical director of thePediatric Transplant Center, and Tom Jaksic, MD, PhD, surgical director of CAIR, figured out a way to solve both problems at once. The procedure is called serial transverse enteroplasty (STEP). STEP solves both problems: 1. It exposes more usable surface area, similar to the way that sharpening a pencil exposes more lead. 2. It creates a narrower space, which keeps food moving through your childs digestive tract at an appropriate pace, carrying bacteria out of her bodyalong with the rest of the bodys waste. Watch a video of an actual STEP procedure. Results: The STEP procedure is now being used worldwide, allowing some children to wean completely from IV nutrition and avoid the need for intestinal transplantation. In the spring of 2004, the STEP Data Registry was started to track outcomes of children who have had the STEP procedure, so that we can better understand its effectiveness compared to other bowel-lengthening procedures. Learn more about the STEP procedure.
Smarter nutrition Problem: Some children with intestinal failure can only receive nutrients intravenously (through an IV). But prolonged use of IV feedings often damages the liver, which can lead to liver failure and the need for a liver transplant. Solution: Childrens researchers Mark Puder, MD, Jenna Garza, MD, and Kathy Gura, PharmD discovered that the then-standard formula included a fat mixture that made fat accumulate in the liver, which may contribute to liver disease. They discovered that switching from the old fat to Omegavan, a fat mixture made from fish oil, (which has been shown to prevent fat accumulation) resulted in a formula thats far less damaging to the liver. Result: This discovery has caused a worldwide shift in treatment. Puder and colleagues are now conducting a formal clinical trial to learn how it can be used even more effectively.