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Our Services for Alagille Syndrome

Our dedicated Alagille Syndrome Program provides the following services:

Multidisciplinary clinic and evaluation day

We offer truly parent-friendly and patient-centered care by bringing together the necessary members of our team to meet with you and perform testing as part of a consolidated visit. We discuss your child’s unique needs in real time, with each specialist (heart, liver, brain, kidney, bones) looking at symptoms through their own specialized lens. Each child will see a hepatologist and a cardiologist. Additional specialists will be added based on our thorough review of your child’s history. To make your visit as productive and educational as possible, we schedule our multidisciplinary evaluation days on Mondays for easy travel. If advanced procedures or surgeries are needed, we can often schedule these on subsequent days. At the end of the assessment, you will receive a summary of our recommendations on how to treat all of your child’s needs. We will also send a summary of our recommendations to your child’s pediatrician and all other subspecialty physicians. Our highest aim is to establish a collaborative partnership with all off your child’s providers.

Diagnostic testing and imaging

  • Alagille syndrome imaging protocol. This specialized, comprehensive imaging study protocol was created by brain and abdominal imaging experts at Stanford to evaluate the important blood vessels in the brain and abdomen while also imaging the heart and the liver. This protocol, combining a number of imaging studies at once, is especially important for young children who may require anesthesia for MRI imaging.
  • Heart imaging. Our nationally recognized cardiac imaging team and radiology diagnostics team use the latest techniques and technology to achieve accurate, multidimensional images of your child’s heart. In addition to the MRI mentioned above, these tests may include echocardiography, electrocardiography (EKG/ECG), cardiac catheterization, reduced-radiation ultrafast/electron beam CT scans, or others.
  • Liver biopsy. A tissue sample is taken from the liver with a small needle and evaluated for bile duct paucity and can also help assess the degree of scarring in the liver.
  • Cholestasis (jaundice) panel. A molecular genetic test looks for variances in certain genes related to Alagille syndrome and other inherited diseases.
  • Blood tests. These are performed to evaluate liver and heart function.

Nutrition services

Babies and children with Alagille syndrome can struggle with failure to thrive (a state where they have difficulty gaining weight). Some children are also challenged by conditions of the pancreas or liver that inhibit proper growth and the absorption of nutrients such as fat-soluble vitamins. Our dedicated registered gastroenterology dietitian works with your family to create a plan to ensure that your child receives proper nutrition to maximize growth and development.

Lifetime medical care

Once we see your child, we form a collaborative relationship with your child’s primary care pediatrician, gastroenterologist, and cardiologist at home to carry out your child’s care plan. Since our Alagille experts are further sub-specialized in cardiology and hepatology, most doctors welcome the opportunity to collaborate on care. We also conduct virtual visits with you and your child in collaboration with your local doctors, and, when warranted, yearly in-person visits, especially if your child has complex needs.

We help manage your child’s care through the years to ensure that it stays current with the latest treatment philosophies and options. If your child has a liver transplant, he or she is assigned a transplant care coordinator who arranges care for your child into adulthood, including follow-up visits at outreach clinics throughout the West with our liver transplant care team. The Alagille Syndrome Program patient care coordinator is always a resource for your questions before, during, and after your evaluation day.

Patient and family support

At Stanford Children’s Health, we care for you as if you are family. We want you to feel at home. While you are staying with us, we welcome you to take advantage of our hospital’s extensive patient and family services. We also recommend that you visit the Alagille Syndrome Alliance for information, support groups, and warrior stories.

Second opinions

If you or your provider suspects Alagille syndrome, we are happy to offer a second opinion and help you find answers to the questions you may have. This can be done on an evaluation day or by directly contacting us via email at Alagille@stanfordchildrens.org or phone at (650) 497-5418.

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