Imagine a doctor saying, “Your baby may not survive.”
Time is short. You search for information, and when you find it, you can’t be sure it is reliable.
That was our situation 13 years ago. I remember all too well searching for hope, information, and support for my twin daughters’ fetal syndrome diagnosis (TTTS). Information was hard to come by and it was nearly impossible to know if we could believe what we did dig up. Thankfully, with hope and a bit of luck, we found our way to immediate intervention via fetal surgery. Today my daughters are healthy and thriving.
But I remember that feeling, that urgent pursuit of hope. Our scary experience is why we started the non-profit Fetal Health Foundation almost 10 years ago. As a result of those days of frantic searching, having medically-reviewed, factual information readily available to parents was our priority. Other parents shared this need and wanted an organization that would work with leading researchers and treatment facilities. The organization we envisioned would provide up-to-date information on many syndromes, which, while rare, affect many hundreds of thousands of pregnancies each year.
A Global Reach
A decade later, the Foundation is a reality, and we’re closer to our goal of having syndrome information readily available. At the conclusion of 2015, we launched our new Fetal Health Foundation website. Instead of the clinical feel of websites parents often encounter, we wanted the site to feel warm and comforting. Our team lingered on the what it feels like to hear a diagnosis, and they worked their magic beyond what we could have ever envisioned. We are more than thrilled to be rolling out our wonderful site with access to so much information.
In a matter of a few weeks, visits to our site from both American and international parents seeking support skyrocketed. We’re grateful to see the Foundation help families in our community and also those in many countries around the world.
In one case, a family in Southeast Asia reached out to us, even writing the email in their native language. They needed support and information for a diagnosis of a fetal syndrome. With the help of our medical support advisors, after translating their message we were able to start the process of getting them the information they needed to save a baby’s life.
Most recently, people have come to us for information about the zika virus and possible links to microcephaly. We were able to quickly engage the medical community and provide the latest medical information on our website.
Another exciting development? Several leading medical institutions, such as the Colorado Institute for Maternal and Fetal Health, are partnering with us to complete our library of information on over ninety (90) fetal syndromes. This will be the world’s largest repository of information on fetal syndromes and treatments written specifically for parents. We are humbled to be the main source of information and support for families during their time of need, and we will continue to strive to support the needs of families diagnosed with fetal conditions.
Over the next several months, Fetal Health will be taking many steps to better support families all over the world who are faced with a fetal condition diagnosis.
I hope you’ll join us!
Lonnie Somers (father to TTTS survivors)
Chairman & Founder, Fetal Health Foundation
To read more from families who have experienced fetal syndromes, visit our stories section.
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