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COVID-2019 Alert

Information about the 2019 Novel Coronavirus. Read the latest >

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Frequently Asked Questions

My child is getting care from a cardiologist and/or gastroenterologist at home—why should I come to your program?

We are one of the few programs in the nation that is used to caring for patients with severe conditions involving both the heart and the liver. Having several of the best minds on Alagille syndrome come together to assess and treat your child’s manifestations results in a unique level of care—care that takes into account how all systems and organs work together as a whole. Alagille syndrome is rare, so having doctors who subspecialize in the syndrome allows for a holistic approach, including experts for other organ systems when needed. We will always work to partner with your local primary care pediatrician and subspecialty physicians to care for your child, serving as a consultant along the way and seeing your child through the years. 

How do I learn more or sign up for an evaluation day?

The first step is to simply contact us via email at Alagille@stanfordchildrens.org or phone at (650) 497-5418 and speak with our patient care coordinator. Or, have your child’s pediatrician, gastroenterologist, or cardiologist contact us, and we will send them a referral and health history form to begin the process of scheduling your child for a visit. Once we receive this information, we will plan your evaluation day, making sure all necessary tests (echocardiograms, CT scans, MRIs) are completed before you arrive. We may schedule certain specialty testing during your child’s visit.

What can I expect during my child’s evaluation day?

On the day of your visit, you and your child will meet with a hepatologist and a cardiologist, and with additional specialists as needed. These specialists will thoroughly evaluate your child and provide a summary of their findings at the end of the day. We may schedule additional tests for your child, such as a heart catheterization, MRI brain scan, or other studies, procedures, and surgeries on subsequent days. 

The clinic visit may last for a few hours, so please bring any activities or food necessary to keep you and your family comfortable during this time. Our Harvest Café on the first floor of the hospital’s Main building is open from 7 a.m. to 9 p.m. every day for a healthy meal or snack.

What if you determine that my child needs lifesaving surgery?

Your child’s past tests, scans, and health history can help us decide beforehand if your child is likely to need cardiothoracic surgical repair. If we suspect that a surgery will be needed, we can block out time for the surgery around your child’s evaluation day. You will likely need to plan to stay with us for a few to several weeks, depending on the complexity of the surgery. Our patient care coordinator can connect you with our patient and family services to help with housing and any other services that you need.

If your child has severe liver disease and we determine that he or she would benefit from an evaluation for liver transplant, we will coordinate a transplant evaluation around the time of your visit.

What patient and family services do you offer?

While staying with us for care, you are welcome to take advantage of Stanford Children’s Health’s extensive patient and family services, including social services, child life and creative arts, interpreter services, spiritual care, play and recreation, and lodging. Our social workers can help settle you in at the Ronald McDonald House and assist you with other social and emotional needs to make your visit comfortable and productive.

Is Alagille syndrome curable?

While there isn’t a cure for the syndrome, we empower your child to live his or her best life by improving liver and heart function, getting itching or other challenging symptoms under control, and supporting your child’s whole body with a tailored plan.

What are the signs and symptoms of Alagille syndrome?

Signs and symptoms vary from none to several. Children with impaired liver function experience jaundice (yellowing of the whites of the eyes and the skin), pruritus (itchy skin), dark urine, xanthomas (fatty sores under the skin’s surface), and pale stools. Children with moderate to severe Alagille syndrome tend to experience failure to thrive (stunted growth). Children with significant liver disease may develop a variety of conditions including poor blood clotting, fluid in the belly (ascites), feelings of confusion (encephalopathy), weak bones and difficulty in gaining weight and thriving. When the heart is involved, children can experience symptoms related to poor heart and lung function, including but not limited to fast heart rate, chest pain, heart murmur, irregular breathing, shortness of breath, fatigue, or fainting.

Where can I learn more about Alagille syndrome?

We recommend that you visit the Alagille Syndrome Alliance website for information, support groups, and warrior stories of children and adults with Alagille syndrome. From this website, you can also access information on the Global Alagille Alliance (GALA) study that is gathering data and conducting comprehensive analysis of medical information from people with Alagille syndrome around the globe.

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