Pregnancy can be somewhat of an emotional rollercoaster with moments of joy, fear, anxiety, and other complicated feelings scattered throughout the ride. Prenatal care involves a lot of testing with which doctors monitor both parent and baby. Although much of that testing results in nothing out of the ordinary for many people, sometimes an ultrasound or blood panel can point toward a real concern. A fetal syndrome diagnosis can leave families feeling like they’ve been thrown into rocky waters with nothing to hold onto. The diagnosis may be something they’re completely unfamiliar with, and although doctors can point families in a general direction, it’s hard to know exactly where to start. Our charity of the month and the recipient of our $5,000 donation is the Fetal Health Foundation, a parent-founded nonprofit whose mission is to be that life preserver when families need it most.
The beginnings of the Fetal Health Foundation started with Lonnie and Michelle Somers, who found themselves frantically searching for information and resources after their twin daughters were diagnosed with twin-to-twin transfusion syndrome (TTTS) at 20 weeks gestation. During their anatomy scan, the ultrasound revealed that the girls were being affected by TTTS, a disease of the placenta that causes one twin to receive all the nutrition and blood, and the other none to very little. The doctor broke the news to the Somers and the prognosis was bleak—he told them that he had only experienced this once before and the outcome wasn’t favorable. The Somers refused to give up on their daughters and researched TTTS extensively, contacting the TTTS Foundation for help. After a specialist performed an amniotic reduction to ease the pressure inside Michelle’s womb, the couple came home to find a large packet from a supporting organization on their doorstep. The packet contained everything there was to know about TTTS, as well as all the options open to them. With the information they found, the Somers contacted one of the leading experts in TTTS, and Michelle received life-saving surgery that allowed her babies to continue growing and safely be born via cesarean at 35 weeks. Their twin girls spent only 13 days in the NICU before arriving home with their overjoyed parents.
Deeply moved by their experience with TTTS, Lonnie and Michelle Somers made it their life goal to provide awareness, hope, and support to other parents affected by TTTS and other fetal syndromes. They partnered with another mother to twin TTTS survivors, Talitha McGuinness, who was inspired by the Somers and also wanted to give back to the medical community and other families going through something similar. Together, they founded the Fetal Health Foundation to provide support and information that families need to learn all about their new diagnoses. Today, the FHF is a well-respected nonprofit organization that funds research on these fetal conditions and connects families to world-class maternal-fetal medical experts to give their babies the best chance at life.
The Fetal Health Foundation’s website has a list of over 100 conditions, each containing information all about it, as well as treatment center locations that can be filtered by zip code. In addition to providing essential and life-saving information to these families facing a diagnosis, the organization also provides counseling to support those struggling to cope. Every year, 800,000 pregnancies are affected by a fetal syndrome diagnosis, and parents may understandably experience shock, fear, and grief. By working directly with fetal centers to grant research funds to study these conditions further and discover new treatments, the Fetal Health Foundation aims to give hope to these families and be the support system they need to navigate their diagnosis.
If you would like to support the Fetal Health Foundation’s work, you can visit their Ways to Give page here.
