Cardiovascular Connective Tissue FAQ

I am getting care from a cardiologist and other doctors at home—why should I come to your program?

Simply put, several heads are better than one or two—especially when our doctors are all experts in connective tissue disorders. Because our knowledge goes well beyond general pediatric cardiology, we are able to identify and treat unique manifestations of connective tissue disorders. Since we see a large number of children with connective tissue disorders, we often make new discoveries that advance care for your child and future children. We provide an evaluation and the necessary complex care here, then establish a relationship with your doctor to manage your child’s care, touching base with you regularly. Since connective tissue disorders are rare, most physicians are not thoroughly versed in them. We do not want to take over care of your child. In fact, we rely on collaboration with your hometown doctor to ensure the very best care for your child. We envision you returning to us over the years as needed, especially if your child has complex needs. We treat your child into young adulthood.

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

The first step is to simply contact us via email or by calling (844) 988-6220 and speaking with our intake coordinator. Or, have your child’s primary care physician or cardiologist complete a cardiovascular connective tissue disorders referral form. Once we receive a completed referral form, we will contact you to discuss your child’s health history and current symptoms. 

From your child’s background information, we evaluate which providers would be most beneficial for you to see, and we welcome your input on your intake form. We then schedule your evaluation day. In this way, we tailor your child’s visit to fit your specific needs. Filling out the intake form a few weeks prior to your visit is advised to ensure that a complete plan is in place for the day.

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

On the day of your visit, your child will be scheduled with selected providers, although you will have the opportunity to meet our entire team of specialists. Having a multidisciplinary team of experts gathered together to consider all aspects of your child’s condition and how it interacts with other health needs helps us provide the very best care for your child.

On the morning of your evaluation day, providers rotate in and out, one by one, evaluating your child, reviewing existing tests, and asking questions. In the afternoon, we schedule tests and studies, such as echocardiograms, x-rays, ultrasounds, and MRIs, and may collect saliva samples for genetic testing. At the end of the day, you sit down with our medical coordinator, who will review all of our findings and deliver our detailed care plan. In-depth studies and procedures will be scheduled on surrounding days whenever possible.

The clinic may last for a few hours, so please bring any activities or food necessary to keep you and your family comfortable during this time. At the end of the visit, you will sit down with our team’s nurse, who will review the team’s recommendations and care plan moving forward. 

How can you coordinate my child’s care when we live far away?

After you see us, we form a collaborative relationship with your child’s primary care physician or cardiologist at home to carry out your child’s care plan. Since connective tissue disorders are a subspecialty in cardiology, most doctors welcome the chance to collaborate on care.

Can my child be involved in a clinical trial or research?

Yes. When research studies become available, your child is welcome to join. Talk with your child’s care coordinator about your wishes.

Are connective tissue disorders curable?

Not yet. Current research holds promise that correcting targeted gene defects might someday lead to a cure for Marfan syndrome. Cures for the more complex Williams syndrome are not on the horizon, but new medications are being developed to help your child’s body cope better with certain expressions of the disease.

How do you support patients and families?

At Stanford Children’s Health, we care for our patients’ families as if they are our family. We want you to feel at home. We have extensive patient and family resources, including social services, child life and creative arts, interpreter services, spiritual care, play and recreation, and lodging. For example, if you require a place to stay during a heart or PAR surgery, you may stay at our Ronald McDonald House at no charge. Our social services staff get to know you to provide family-centered care tailored to you. To keep your child and his or her siblings entertained and learning during a hospital stay, our child life specialists provide developmentally appropriate art projects, games, and activities. To learn more, ask our program’s care coordinator to make connections for you.

Do you care for my child once he or she becomes an adult?

When your child enters young adulthood, our team connects you and your older teen with experts in cardiovascular connective tissue disorders at Stanford Health Care. Your child with Williams syndrome can continue to be seen, even as an adult, at Stanford Children’s Health.