When my wife and I started trying to get pregnant, we were a little naive to how easy it would be. What went from excitement of learning we were having twins, soon turned to worry as doctors mentioned foreign phrases like “fetal syndrome”, “TTTS”, and “high risk specialist”. We were shocked. How could this happen? Did we cause this? What now?
We were only 20 weeks into the pregnancy and for the duration, it became a rollercoaster ride of emotions, scrolling the internet to learn all we could about the diagnosis, doctor appointments for monitoring, rest and proper nutrition, and finally a laser procedure for which we travelled clear across the country that saved my girls’ lives. TTTS would have killed my twins if not for our doctors and the in-vitro laser procedure that now saves hundreds of thousands of babies each year.
Like us, families diagnosed with a fetal syndrome often have only a few emotional days to find a life-changing medical treatment in efforts to save their pregnancy and realize their dreams of becoming a family. Sadly, they’ve been told there is no hope for their baby or babies to survive. In this terrifying moment of realization, my wife and I created the Fetal Health Foundation as a way to provide emotional support and a direct connection to leading fetal treatment centers and doctors around the world. Our daughters were our inspiration, and we love knowing we’re helping other parents going through similar and unfortunate circumstances.
What started as a fun, local 5K to spread awareness about TTTS has now become a multi-city fundraising and awareness event, and a 12 year long journey to support parents when they need it most. In the beginning, we served so many families facing TTTS and other multiple birth issues mainly because it’s what we knew and how we could relate, but through our connections and experience, we now offer support to even more syndromes unrelated to twins.
It is also through families just like ours who work to advocate and help spread awareness around fetal syndromes through events like our National Great Candy Run, now reaching over 10,000 people across the country.
With so little information available at the time of our diagnosis, my wife and I wanted the Foundation to truly be a source of hope and information. We created a unique Medical Advisory Board that is available on our website and is the only way we are able to ensure accurate information and even provide second opinions for families when necessary. The Board is comprised of some of the top fetal and maternal specialists across the country, many of them also fetal surgeons who provide life-saving care when a diagnosis is given.
More recently and perhaps more importantly, the Foundation has been able to provide research grants, funding new treatments and technologies to save more babies’ lives. We are excited to see those funds used for efforts toward creating better imaging and equipment used in the surgeries of so many fetal syndromes.
Today, hundreds of parents will receive a fetal syndrome diagnosis and sadly, more than 200 babies will die due to lack of information and absence of treatment. The difference is that with the launch of the Foundation’s newest website, there are now answers and hope.
Created to showcase one of the most robust repositories of fetal syndromes, Fetal Health’s website provides information on upwards of 100 syndromes, including an explanation of the diagnosis, treatment options available, as well as fetal centers around the country that provide that care. Now and never before has there existed a site with so much information about fetal syndromes in one place. This dynamic changes everything for a parent facing a fetal syndrome diagnosis.
The Foundation’s website also provides stories to help share the journeys of families and how they overcome obstacles in their fight to save their babies’ lives.
Only launched a few short months ago, the website’s traffic has increased tremendously and is reaching families in our own backyard, but as far away as Malta and Indonesia. It makes it even more clear how badly parents need a source of hope in their darkest hour.