Noelle Philomena Laughlin - December 13, 2016
“There is no easy way to say this, but...”
These are the words expectant parents never want to hear from their doctor, yet are heard by an estimated 4,000 parents in the US every day when they receive a fetal diagnosis. In 2016, we became one of those families.
We were 20 weeks pregnant with our daughter when doctors discovered abnormally high levels of fluid surrounding her heart - a major cause for concern. In an instant, a pregnancy once full of joy and excitement shifted to survival mode.
From that point on, we were at the doctors once, twice, sometimes three times a week, shuffling between specialists and varying opinions. It felt like a carousel of hope and fear.
At 24 weeks gestation, we officially received the diagnosis of Hydrops Fetalis, a rare fetal condition with a very poor prognosis. We were seen at Children's Hospital of Philadelphia (CHOP), where our care would remain until we met our baby girl.
Even more overwhelming than the moment we were given the diagnosis were the physical, emotional, and financial roads that lay ahead of us. We spent the next six weeks traveling to and from CHOP from our home in New Jersey, being seen three times a week. Along the way, Jodi underwent four in-utero procedures to try to drain the fluid that was compressing Noelle's heart and lungs - two of which required overnight stays.
This journey required extended periods of time off of work, while racking up nearly $7,000 in out-of-pocket expenses along the way.
Noelle Philomena Laughlin was born and died on December 13, 2016 at 30 weeks gestation. We named her Noelle because she was born during the Christmas season, one that embodies hope and love.
Her death gave us sadness that we didn't know existed. But her life gave us a love we never knew was possible. That life has inspired us to light a path of hope and support for other families, to remind them that they are not alone and that, despite going through the unimaginable darkness, the light will not be overcome.
- Jodi & Alex Laughlin, Noelle's parents & Co-Founders of Noelle's Light