Personal Care for the Whole Family
If a child you love suffers from a serious liver disease or small bowel disease and may require a transplant, finding the highest quality care is your top priority. The Transplant Center for Children at MedStar Georgetown University Hospital is Washington, D.C.’s largest program and the nation’s third largest program. We offer comprehensive and unique care that your child needs.
We also understand how difficult it can be for families when a child is critically sick. All patients at the Transplant Center benefit from the unique MedStar Georgetown spirit of cura personalis. This is our mission to care for the whole person–including families.
Comfortable and calming facility
To help kids relax while they are away from home, our facility is decorated in a beach and sandcastles theme, with a 100-gallon fish tank and undersea murals on the walls. Kids have access to games, books, and activities – even video games in their rooms.
Special accommodations for parents
All patient rooms have couches that fold into beds and ample closet space so parents can live in with their children. We also provide cooking and laundry facilities.
Caring multidisciplinary team
Transplant nurses, nutritionists, social workers, and child life specialists work with each child to ease anxiety and offer specialized support.
Services we provide at the Transplant Center for Children
- Pediatric liver disease care
- Small bowel disease care
- Multi-organ transplant
- Non-Transplant Treatment Options
- Total Parenteral Nutrition
- Total pancreatectomy with Autologous Islet-cell Transplant (TP-AIT)
The Transplant Center for Children at Georgetown University Hospital is committed to providing complete personal care. We thoroughly evaluate your child before any liver or small bowel transplant surgery. We work closely with our referring colleagues and your local care team before, during, and after transplantation.
The pretransplantation evaluation is done to determine the severity of your child’s disease, whether the condition can be medically or surgically managed, and whether your child is a candidate for transplantation. Pretransplantation testing includes a general health assessment; testing for blood clotting disorders, infectious diseases, brain, heart, kidney, and lung function; imaging of the abdominal and vascular anatomy; and education and a support plan to help prepare you to care for child during and after the transplant.
Families can expect an evaluation to include:
- Meeting with a nurse. A nurse who understands liver or small bowel diseases will meet with your family and explain everything about the process and procedure.
- Social worker assessment. A social worker will assess your family’s personal situation and ability to cope with the strains of a transplant. We will provide whatever assistance your family needs to support you through the process.
- Transplant surgeon evaluation. A transplant surgeon will examine your child to determine the technical details of the transplant.
After the evaluation, your child’s case is presented to the transplant selection committee. If the committee agrees that transplantation is the appropriate treatment, your child will be placed on the United Network for Organ Sharing (UNOS) waiting list.
The transplant team will closely monitor your child’s condition in coordination with your primary care physician as you wait for an organ to become available. You will receive ongoing education about your child’s condition and about transplantation.
When an organ becomes available, your child will be admitted and undergo transplantation surgery and recovery, first in the intensive care unit, then on the pediatric transplant unit in the hospital.
While your child is recovering, your family will complete the transplant education program. When your child is discharged from the hospital, the transplant team will continue to closely monitor your child in our outpatient clinic. Labs will be drawn every 2 months. Usually about three months after the transplant, most of your child’s care is transitioned to your child’s primary care doctor and gastroenterologist, with follow up every 3 months. Your child will continue to be seen by the transplant team on a yearly basis or as needed to monitor his or her condition.
Small Bowel and Pediatric Liver Transplantation Program
The Transplant Center for Children at MedStar Georgetown is a unique facility—our 15-bed center allows parents to live with their children while they are waiting for a transplant or being treated for their liver or small bowel conditions.
Our team of surgeons is world-renowned for its innovative and compassionate expertise. They have performed more than 1,000 liver transplants and 300 small bowel transplants.
Our team performs about 40 transplants each year, five times as many as at the average pediatric transplant program.
The team includes some of the world’s leading experts on pediatric transplants and pioneers new, complex techniques that other programs around the world seek to model.
We also collaborates with a wide range of specialists both at MedStar Georgetown and at Children’s National Medical Center.
Pediatric Liver Disease
A variety of liver conditions can require surgery or a liver transplant in young children.
Babies and children generally contract hepatitis through contact with contaminated diapers (hepatitis A) or from an infected mother during birth and delivery (hepatitis B). Metabolic diseases can also lead to hepatitis infections.
Bile helps the body digest food and nutrients. In some babies, the tubes that deliver bile from the liver to the gallbladder do not develop properly. Defective tubes can cause blockages of built-up bile in the tubes, which can lead to complications like cirrhosis (severe liver scarring).
About eight weeks after Serena was born, she was diagnosed with biliary atresia. The conclusion was that she was going to need a life saving liver transplant. Serena's father was a candidate for the liver donation and surgeon removed 13% of his liver to replace Serena's entire liver.
Hepatoblastoma is a type of cancerous liver tumor that affects babies and children under age 3. It can cause cancer to spread to other organs including the lungs, stomach, or bone marrow.
Bile ducts deliver bile from the liver to the gallbladder. Some babies are born with bile ducts that never fully developed. As a result, bile can get stuck in the tubes and form choledochal cysts (lumps), which can cause jaundice or become infected and need to be removed with surgery.
Metabolic Liver Diseases
A wide variety of metabolic and genetic diseases that can affect and damage the liver, including:
- Alpha-1-antitrypsin deficiency
- Wilson’s disease
- Neonatal hemochromatosis.
- Glycogen storage disease type I
- Cystic fibrosis
- Crigler-Najjar Syndrome type I
Pediatric Small Bowel Transplants
Children who suffer from small bowel disease can lose the function of the small intestine. Surgery can repair it, but may also remove part of the organ.
Removing more than half of the small intestine limits its ability to function. It can no longer absorb enough nutrients, food, and liquids to sustain a healthy life. Children who do not respond to other treatment options, such as pediatric surgery, may need a small bowel transplant.
The pediatric surgeons at the Transplant Center for Children at Georgetown University have more experience than almost any other clinic nationwide in pediatric transplants. We perform more than 40 small bowel transplant surgeries each year – more than five times the national average. Our survival rates are also much higher than average. As a result, we are one of only seven centers in the country approved by Medicare and Medicaid Services to perform small bowel transplants.
Your team of surgeons will evaluate your child’s condition and recommend one of the following small bowel transplant treatment options.
Isolated intestinal transplant is a transplantation of the small bowel plus or minus the large bowel.
Modified multivisceral transplant is a transplantation of the stomach, pancreas plus or minus the large bowel.
Multivisceral transplant is a transplantation of the liver, stomach, pancreas, small bowel plus or minus the large power.
Liver intestinal transplant is a transplantation of the liver, pancreas, small bowel plus or minus the large bowel with preservation of the native stomach, as well as the native pancreas.
When a child is too sick to eat normally, intravenous feeding or TPN can deliver the nutrition he or she needs. But over time, these methods can cause serious liver problems, damage other organs, and lead to organ failure. When this happens, a child may need up to six or seven organs replaced with a transplant. These organs can include:
- Small Bowel
Any single organ transplant is a complex procedure, especially in a small child. That is why you need the most experienced team of pediatric surgeons available to care for a child in need of a multi-organ transplant. The pediatric surgeons at the Transplant Center for Children at Georgetown University Hospital are world-renowned for unparalleled expertise and quality, personal care.
As one of the top three centers for pediatric transplants in the nation, we have performed more than 1,000 liver transplants and 300 small bowel transplants. Our doctors are pioneering new, complex techniques that other centers seek to model.
Non-Transplant Treatment Options
One of our top priorities at the Transplant Center for Children at MedStar Georgetown Transplant Institute is to help your child avoid the need for an organ transplant. That is why we offer a wide range of non-transplant treatment options, including pediatric surgery, whenever we can.
When Dvir Sabag was 12 years old he was rushed to MedStar Georgetown with autoimmune hepatitis, a disease caused by an overactive immune system. Through medical treatment, transplant specialists helped him avoid needing a new liver.
Non-transplant treatments are most effective when we offer them to patients as early on as possible – often in the first month or two of life.
Our recommendations for non-transplant treatment options depend on your child’s particular condition. We use the most cutting edge and advanced methods.
Our surgeons have extensive expertise and experience treating a wide variety of conditions. Conditions that can benefit from surgery include:
- Biliary atresia – The Kasai procedure is a special surgery that connects the liver to the small intestine. This works around the underdeveloped bile ducts. Bile can then move through the body more effectively.
- Liver cancer – Surgery helps remove as much of the liver tumor as possible.
- Choledochal cysts – Surgeons remove the bile duct containing the cyst, which often restores the health of the intestine.
- Intestinal atresia – Surgeons can repair the part of the intestine that is underdeveloped.
- Necrotizing enterocolitis – If the condition tears a hole in the intestinal wall, surgeons can repair the hole in one or two surgical procedures.
- Malrotation and volvulus - Surgeons can examine the health of the intestines, twist and place them in the right position. Surgeons can also remove any damaged section of the intestines.
- Short bowel syndrome – In certain situations, surgeons may be able to perform lengthening procedures that increase the length of the native intestine, which can improve intestinal motility and increase absorption. This is a known as a STEP procedure, or serial transverse enteroplasty (STEP) procedure.
Before and after any surgical procedure, we give patients antibiotics to ward off infection. We also use medication to treat certain metabolic disorders that have not resulted in severe liver damage.
Often, infants with intestinal conditions need extra nutrients, calories, and vitamins. Our nutritionists will help design the most effective nutritional treatment plan. If children are too sick to take in food orally, we use special feeding techniques, including total parenteral nutrition (TPN) to make sure they get exactly what they need.
Chemotherapy drugs can help stop the growth of cancerous liver tumors, or help shrink an existing tumor.
Total Parenteral Nutrition
Infants who cannot absorb nutrients through their gastrointestinal tracts require a different way to get nutrition. Total parenteral nutrition (TPN) gives infants the nutrients they need by delivering fluids directly into their veins. These fluids contain a balanced mixture of nutrients including: electrolytes, calories, amino acids, vitamins, minerals, and fats.
Extended use of TPN can cause further liver problems, bowel problems, or damage to other organs. It is important to discuss these risks with your surgeon.
If your baby needs TPN, it’s natural to feel scared and overwhelmed. The doctors and nurses at the Transplant Center for Children at MedStar Georgetown University Hospital understand your concerns. You can rest assured that you and your baby are in good hands. Our team is one of the most experienced in the country, and includes the world’s experts in hepatology. We pioneer the most innovative treatments, and other centers visit us to learn how to “do it the Georgetown way.”
We will closely monitor your baby and offer the most effective treatment options. Our nurses and social workers also support families with information, help, and compassion throughout treatment.
Our facilities also offer large, private rooms with couches that pull out into beds. You can plan to live in the hospital with your baby for as long as necessary.
We share your goal – to give your baby the best chance for the most complete recovery.
Total Pancreatectomy with Autologous Islet-Cell Transplantation (TP-AIT)
The Islet-cell clinic at MedStar Georgetown University Hospital is one of only a few institutions in the United States offering total pancreatectomy with Autologous Islet-cell Transplantation (TP-AIT) for patients including young children.
If your child has developed acute recurrent or chronic pancreatitis and is experiencing pain in the abdomen, TP-AIT may be the best option. This procedure involves removing the pancreas, isolating the islet-cells from it and then placing then back in the body, usually in to the liver. The gastrointestinal tract is reconstructed after the pancreas is removed. This procedure has meant that many children have been able to return to normal life without having to worry about or be bothered by severe and un predictable pain that accompanies this disease.
The Islet clinic, our experts in complex surgeries in children and our team specializes in transplantation in children will be happy to provide the information and support you need to make the best decision for your child.