Receiving a new Williams syndrome diagnosis can be overwhelming and scary. The internet is full of information, much of it contradictory and often it is not what you want to hear. If you’re reading this, you have likely received or suspect a Williams syndrome diagnosis for your child or someone you love. The first thing you need to know is that you are not alone. When you have finished reading this information, please join us on our private Facebook support group or reach out to one of our provincial contacts.
There are few things you’ll want to attend to right away.
First, there are some health challenges that are common in those with Williams syndrome. You’ll need to be referred to cardiology right way. The cardiac issues can range from mild to severe. It’s very import to investigate any possible complications.
In addition to a visit to the cardiologist, you may need to address calcium issues, feeding challenges, low tone, reflux, sleep challenges and access to early intervention services for your child. If your geneticist doesn’t make referrals on your behalf, connect with your current care provider as soon as possible and set up an appointment to talk about the Williams syndrome diagnosis.
As Williams syndrome is rare, they may not have any other individuals with WS in their practice, but there are a number of resources available to help you navigate this new challenge together.
There are anesthesia concerns for individuals with Williams syndrome, so it’s important to mention the diagnosis if your child requires surgery. You can download the latest guidelines for anesthesia published by the Williams Syndrome Association in the US, here. Print them out and bring them to any pre-op appointments.
You may have noticed that your child is smaller than his or her peers. There are growth charts that map size and weight for those with Williams syndrome. You can download a growth chart for boys or girls to share with your care provider here.
You’ll learn a lot in the next little while. You’ll soon be an expert on many things that you never thought you’d need or want to know. It’s amazing how quickly you’ll learn a whole new language of specialists and evaluations. Don’t lose sight of the fact that Williams syndrome is just one aspect of your child even thought it may feel like the most monumental thing right now. Your child will grow to have likes and dislikes, favourite foods and favourite songs and a shirt they like more than any other. While your child does have Williams syndrome, it is not their whole story. Take some time to reflect on everything that makes your child special.
When to share the news of the diagnosis with friends and family is a personal decision, but finding support – online with other parents, at your local health centre, in your community or among family and friends – will be enormously helpful in the weeks, months and years ahead. Join CAWS, connect with other Williams syndrome organizations and seek out parents in your community.
From those who can help you find services and community programs, to conversations with those who really get where you are, to those who love you no matter what, a strong support system can make a world of difference.