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If you would like to learn more or if you are ready to make an appointment, please call or email our team.
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.
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.
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.
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.
If your child requires a complex heart surgery or interventional cardiac catheterization procedure, ask about our Heart Center Coordination Program, which can provide your family with a cardiac nurse navigator to guide you through your child’s care journey at Stanford Children’s. The program is currently supporting pediatric patients with certain complex heart needs
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) 249-9137.
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