When advocating for your child with WS or for yourself, it is important to recognize that WS is a rare enough disorder that most healthcare professionals would not be expected to be aware of the constellation of issues that can be involved.
In order to provide comprehensive care, it is often in the patient's or caregiver's best interest to seek additional opinions from doctors who may simply have more experience providing healthcare to the WS population. Any family should be comfortable broaching this subject with their physician, without worrying about stepping on toes. Most healthcare providers welcome getting more information from physicians with more experience caring for patients with WS.
This is especially important when addressing the issue of anesthesia risk. Families should feel empowered to make it clear that patients with WS have additional risks associated with anesthesia and to bring this fact to the attention of the team providing the anesthesia. To this end, active research is underway to both understand the nature of these risks and to provide information to achieve the best outcome. Doctors can be directed to the WSA (www.williams-syndrome.org) to connect to links with such information. Specific information regarding anesthesia risks is also available: https://www.williams-syndrome.org/doctor/anesthesia-concerns, which offers printable articles and resources that can be provided directly to your physician(s).
The medical community is working with many variables, and it is often up to us to help advocate, inform, and take an active role so the best care can be provided.