When our middle child, Owen Nathaniel, unexpectedly passed away after a “textbook” perfect pregnancy our doctor told us, “Sometimes healthy babies just die.” But we couldn’t comprehend how our son, whom we had been excitedly preparing to meet for seven months, could suddenly be stillborn.
The dreadful realization that our providers would not learn from Owen’s death added to our torment; they made no attempts to help us uncover the cause (even discouraging us from requesting an autopsy). According to national data, our handsome blonde baby who was delivered via c-section as his heart rate crashed, but was tragically unable to be resuscitated, was simply reported as another “unexplained intrauterine fetal demise”.
Our family was thrust into a nightmare that 65 families are forced to endure every day. I left the hospital fully postpartum with milk coming in, but no baby to feed. We laid Owen to rest in a tiny casket wearing the cozy teddy bear outfit we picked out for him a week earlier. For years I was consumed with discovering what had gone wrong, dissecting pieces of our medical records trying to find the exact misstep that caused our son’s death. This mystery haunted me because I knew I had done everything “right” and I was terrified that it could happen again as we continued to try to grow our family.
Six years after our loss we learned the cause of Owen’s death could be determined by placental pathology. In less than a week we finally knew what had killed him: cord compressions that occurred over the last few days of the pregnancy. Unfortunately, this was missed by our low risk pregnancy care as the cord was never monitored and fetal movement education was not offered. Since January we’ve been trying to have Owen’s cause of death corrected because we don’t want his death to be in vain. We’ve been met with resistance, but we’ll continue to demand his records be updated and encourage other loss parents to do the same to ensure future generations receive better care.
Joshua and I have been actively involved with advocating for stillbirth prevention (both locally and in D.C.) along with other parents exposing the heartbreaking details of our traumatic losses pleading for our country to address this neglected public health crisis. We’re finally seeing change on the horizon as we have hope that our country will pass TWO powerful bipartisan bills, the SHINE for Autumn Act and the Maternal and Child Health Stillbirth Prevention Act (SPA). We’ve been thrilled to gain the support of our senator, Thom Tillis, on SPA as an original co-sponsor and Representatives Wiley Nickel and Jeff Jackson on both bills, but we are aiming to have the full support of all our state’s members of Congress.
The SHINE for Autumn Act (H.R. 5012/S.2647) is a comprehensive legislation aimed to lower our staggering rate of stillbirth by taking critical steps to invest in research, training for perinatal pathologists, enhanced education and awareness, and improved data collection so that we can begin to identify and swiftly implement strategies for prevention. Without investment in these areas, we are very limited in what we can do to help families bring their babies home safely.
The Maternal and Child Health Stillbirth Prevention Act (H.R. 4581/S. 2231) is another important bill that will allow states to use already available funds towards evidence based programs to prevent stillbirth. Amending the wording of Title V of the Social Security Act will make it possible for every state to immediately work towards protecting vulnerable babies.
During this Pregnancy and Infant Loss Awareness Month, it is our sincere hope that our community will not just offer us condolences but take action to stop babies from dying. Momentum is building as the Senate recently passed SPA by unanimous consent, but we all need to keep pushing to make sure these life-saving laws take effect this year! Join us in demanding an end to preventable stillbirths in memory of Owen and all babies gone too soon. Please go to http://bit.ly/StopStillbirth to ask your legislators to support our efforts. Raise your voices with us to say “Not one more!”
Written By:
Ana Lepe Vick
Co-Director of Communications for PUSH for Empowered Pregnancy
Learn more about stillbirth prevention: www,pushpregnancy.org