Blending philanthropy & policy

The program is based on research out of Norway that showed a 30% reduction in stillbirth when nurses, doctors and health systems educated expectant parents on getting to know their baby’s normal movement patterns in the third trimester of pregnancy and encouraged them to speak up if they noticed a change. Time and time again, this early warning system works. A change in a baby’s movements are the earliest, and sometimes only, indication that something might be going wrong in pregnancy. Iowa’s stillbirth rate declined 32% in the first decade of Count the Kicks, while the rest of the country remained relatively stagnant.

This kind of systemic change only happened with the help of our Iowa health partners like MercyOne, UnityPoint, Broadlawns, University of Iowa Hospitals and Clinics, Iowa Clinic, Wellmark, Iowa Total Care, Molina Healthcare, Wellpoint, Delta Dental and our earliest supporter, the Iowa Department of Health and Human Services. Coalitions are key. Relationships matter.

As our prevention work continued to prove itself over the years, states beyond Iowa wanted to be a part of expanding Count the Kicks into their state. But what we discovered was that some states did not even know about the crisis of stillbirth, or that research shows a minimum of 25% of all stillbirths can be prevented. This led us to discover that Title V, the largest funding mechanism states have to fund and address maternal health issues, lists a lot of important things on which congressional funding should be spent, but it never mentions stillbirth. This seemed like an outrageous oversight to us — with our country losing more than 21,000 babies to stillbirth every year. To put this into perspective, more babies are stillborn in the U.S. every year than the number of deaths among children aged 0-14 years from preterm birth, sudden infant death syndrome, accidents, drownings, guns, fire and flu combined, according to National Vital Statistics — but no one is talking about it.

To right this wrong, the Maternal and Child Health Stillbirth Prevention Act was born. A strong, bipartisan effort began — led in the U.S. House by Rep. Ashley Hinson, R-Iowa, Rep. Alma Adams, D-N.C., Sen. Jeff Merkley ,D-Ore., and Sen. Bill Cassidy, R-La., — to update Title V to include stillbirth. It was a powerful call to action for states to address stillbirth and do all they can to prevent it. The bill was signed into law on July 12 by President Joe Biden. Healthy Birth Day Inc. was the primary stakeholder: building a coalition, working with thousands of advocates and organizations across the country and centering the importance of bipartisanship.

We were most successful when we told our personal stories of loss and saves — and when we used a bipartisan approach. In 2024, that is the only way to accomplish something in Washington: Show the effort as a win for everyone. The Maternal and Child Health Stillbirth Prevention Act was signed 20 years after our organization’s very first policy win. In 2004, our founders worked with the Iowa Legislature to establish Iowa’s Stillbirth Registry to gather data on stillbirth. Back then, our founders also garnered support from then-U.S. Sen. Tom Harkin to secure Centers for Disease Control and Prevention funding for the effort — a 20-year arc that illustrates the intersection between nonprofits and policy, and how it can improve lives.

The same values, vision and heart exist today — we just have thousands more people doing the work of raising awareness about stillbirth prevention. Stillbirth is becoming less taboo and less unknown, and it all started with five Iowa women who had a vision that when the world becomes a safer place to have a baby, everyone wins. Our organization estimates more than 6,000 babies will be saved each year from preventable stillbirth once all 50 states adopt proven stillbirth prevention efforts like Count the Kicks.

What’s one trend you’re seeing with volunteer engagement?

The power of storytelling has fueled more volunteer engagement with our stillbirth prevention work. We’ve seen lawmakers, corporate funders and donors come to greater clarity and action after listening to stories from families who share how stillbirth has affected their family. It’s a powerful way for a volunteer to spend their time. By using their voice to bring change, it helps everything about our mission: more grants, approved legislation, more Count the Kicks expansion and a greater understanding of why the work is important. Most importantly, volunteer advocates say it helps their healing process and honors the baby they said goodbye to way too soon.