Sept. 19 marked the Fifth Annual National Stillbirth Prevention & Awareness Day, a day to remember the babies and families impacted by stillbirth and to bring greater attention to what we can do to prevent more families from experiencing this devastating loss.

Stillbirth affects more than 20,000 families in the United States every year. Behind that number are parents, grandparents, siblings and communities who carry the loss of a baby with them for a lifetime. National Stillbirth Prevention & Awareness Day creates space to honor those families while also calling attention to the research, education and prevention efforts that can help reduce stillbirth.

This year, advocates, healthcare professionals, parents and community members came together across the country. There was a resolution in Congress, proclamations in states and communities, illuminated landmarks and conversations about the policies and research needed to prevent stillbirth.

Here’s a look back at National Stillbirth Prevention & Awareness Day 2026.

Congress Recognizes National Stillbirth Prevention & Awareness Day

For the fifth consecutive year, members of Congress introduced a bipartisan resolution recognizing Sept. 19 as National Stillbirth Prevention & Awareness Day. A coalition of more than 30 stillbirth prevention advocates representing 14 organizations, including Healthy Birth Day, Inc., traveled to Washington, D.C. and held more than 70 meetings with members of Congress last week. They discussed stillbirth prevention research and legislation, including the SHINE for Autumn Act, which was re-introduced in the 119th Congress last year.

On Sept. 16, U.S. Sens. Jeff Merkley, Cory Booker and Chuck Grassley and U.S. Reps. Ashley Hinson and Alma Adams introduced a bipartisan, bicameral resolution recognizing the day and highlighting the importance of evidence-based stillbirth prevention.

More than 50 organizations endorsed this year’s resolution, including Healthy Birth Day, Inc., the American College of Obstetricians and Gynecologists (ACOG), the Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN), March of Dimes, Every Mother Counts, Star Legacy Foundation, Return to Zero: HOPE, Yale University, PUSH for Empowered Pregnancy and many organizations working across maternal health, bereavement support and stillbirth prevention. A full list of supporting organizations can be found by clicking here.

The conversations continued at a congressional roundtable hosted by Congresswoman Alma Adams in the U.S. Capitol. Advocates, medical professionals, policy leaders and parents with lived experience of stillbirth came together to talk about clinical innovations, prevention efforts and the need for continued action.

Communities Across the Country Recognize the Day

National Stillbirth Prevention & Awareness Day reached far beyond Washington, D.C.

Communities across the country issued proclamations recognizing Sept. 19 and calling attention to stillbirth prevention, fetal movement awareness, research and support for families who have experienced loss. Statewide proclamations came from Colorado, Connecticut, Illinois, Louisiana, Maryland, Minnesota, Nebraska, New Jersey, New Mexico, North Carolina, Ohio, South Carolina and Wisconsin, while advocates also helped secure local proclamations in 25 communities across the country. 

Every proclamation represents a conversation that might not have happened otherwise. It gives families an opportunity to share their experiences and helps bring stillbirth awareness into local communities.

Additionally, 19 landmarks across the county were illuminated in colorful lights in recognition of National Stillbirth Prevention & Awareness Day, including San Diego City Hall, the Caesars Superdome in Louisiana, and several buildings across the Chicago skyline.

Thank you to everyone who worked to shine a light on stillbirth:

These illuminations served as a reminder that stillbirth affects families everywhere. They also gave families an opportunity to see their babies remembered in their own communities.

In our hometown of Des Moines, Iowa, Healthy Birth Day staff, founders, loss parents, grandparents and stillbirth prevention advocates gathered at the illuminated Iowa Women of Achievement Bridge on Sept. 19. We took time to stand with local families and honor the tens of thousands of families across the nation who have been impacted by stillbirth.

In Omaha, Nebraska Count the Kicks Ambassadors Jessi Michel and Shannon Vaccaro hosted an illumination gathering at the Bob Kerry Pedestrian Bridge. Omaha Mayor John Ewing joined the community and read the Omaha proclamation recognizing Stillbirth Prevention & Awareness Day. We are so grateful to Jessi and Shannon for creating this meaningful space for their community, and to everyone who showed up to remember babies and support stillbirth prevention.

Keep the Momentum Going

National Stillbirth Prevention & Awareness Day also brought renewed attention to federal legislation focused on stillbirth research and data collection.

The Stillbirth Health Improvement and Education for Autumn Act, known as the SHINE for Autumn Act, was introduced in Congress to improve research and data collection on stillbirth. The legislation addresses the need for better information about why stillbirths happen and how prevention efforts can be strengthened. Meetings with members of Congress and their staff in Washington, D.C., helped bring the urgency of stillbirth prevention directly to policymakers and build support for continued action on this issue. 

If you haven’t already, please reach out to members of Congress and ask them to support the SHINE for Autumn Act. This is one important and powerful way to help accelerate progress for National Stillbirth Prevention & Awareness Day.

Learn more about the SHINE for Autumn Act.

As part of this year’s awareness efforts, Healthy Birth Day leaders and stillbirth prevention advocates also shared an open letter addressing America’s stillbirth crisis.

In this letter, Emily Price, CEO of Healthy Birth Day, Inc., Dr. Lee Warner, former Chief of the Women’s Health and Fertility Branch at the CDC, and Sarah Coleman, MPH, Director of Key Relationships for Healthy Birth Day, Inc., discussed the connection between stillbirth and maternal mortality and morbidity, and opportunities to improve outcomes for moms and babies.

We encourage you to read the letter and sign on to help us continue to accelerate progress on stillbirth prevention. Together we can finally end the stillbirth crisis.

Read the open letter and sign on.

National Stillbirth Prevention & Awareness Day may be one day on the calendar, but the work continues all year.

We will keep remembering the babies gone too soon. We will keep supporting families. We will keep sharing evidence-based information about stillbirth prevention and fetal movement. And we will keep working alongside advocates, healthcare professionals, researchers, policymakers and families to push for progress.

Sept. 19 gave us a chance to pause and remember. Now, we keep working to accelerate progress on stillbirth prevention. 

National Stillbirth Prevention & Awareness Day Open Letter | Sept. 19, 2026

It Doesn’t Have to Be This Way

Research shows 25% of stillbirths are preventable. It’s on all of us to support change that leads to prevention. Together, we can finally end the stillbirth crisis.

Jan Caruthers, Co-Founder

Jayden Renee Caruthers was born still at 3:00 p.m. on October 9, 2003. She weighed 4 pounds and 12 ounces. Her skin was so soft, and her face was more beautiful than my husband and I could have imagined. We never got to welcome our daughter into the world because the moment we met her we had to begin saying goodbye. Jayden died of a filamentous cord insertion.

Jan is one of the five original founding moms of Healthy Birth Day, Inc. the 501(c)3 nonprofit organization that created the Count the Kicks campaign.

Kerry Biondi-Morlan, Co-Founder

“Our first child, Grace, was born still at eight months due to placental infarcts. Although the pain of losing her was unbearable, the gifts she has given us have been extraordinary. Grace has blessed us with three healthy children, hand-picked, just for us. Every time we hear that a baby has been saved by Count the Kicks, it is like receiving a very special message from heaven. The time that I devote to Healthy Birth Day is the time I get to dedicate to Grace. Five special angels gave the founding mothers the gift of friendship at a time when it was most needed, and in turn, Count the Kicks is their legacy. I am proud to be Grace’s mother and I look forward to the day when every baby has a Healthy Birth Day.”

Kerry is one of the five original founding moms of Healthy Birth Day Inc., the 501(c)3 nonprofit organization that created the Count the Kicks stillbirth prevention program.

Support The BUMP Act in North Carolina

The Building Understanding of Movement in Pregnancy Act” or “The BUMP Act” is bipartisan legislation aimed at making sure North Carolina families will receive clear, consistent information on warning signs and fetal movement, while also improving provider response and prioritizing communities facing the greatest risks and disparities. The BUMP Act will also bring Count the Kicks education to North Carolina families.

President Biden Signs The Maternal and Child Health Stillbirth Prevention Act of 2024

This marks the first time in history that Congress has passed legislation to specifically address the stillbirth crisis

WASHINGTON, D.C. (July 12, 2024)- President Biden has signed the bipartisan Maternal and Child Health Stillbirth Prevention Act of 2024 (H.R. 4581). This law amends Title V of the Social Security Act to add stillbirth and stillbirth prevention, something that has been left off since it was written nearly 100 years ago. The Maternal and Child Health Stillbirth Prevention Act provides both clarity and a vital call to action to state health departments across the nation that they can and should use a portion of the existing $2.6 billion of Title V Block Grant funding to prevent stillbirth.

The Title V Block Grant is the single largest funding mechanism to address maternal and child health issues in the United States, with services reaching more than 93% of pregnant women in 2022. Currently, fewer than 20 state health departments are using a portion of these existing funds to address stillbirth, leaving expectant parents in most U.S. states and territories more vulnerable to stillbirth. This clarification will support stillbirth prevention activities, thereby helping to save the lives of mothers and babies.

Senators Jeff Merkley (D-Oregon) and Bill Cassidy (R-Louisiana) led The Maternal and Child Health Stillbirth Prevention Act in the Senate, where it passed on unanimous consent June 11. The House approved this bill on May 15 in a vote of 408-3, where it was led by Rep. Ashley Hinson (R-Iowa) and Rep. Alma Adams (D-North Carolina). 

“The successful passage of The Maternal and Child Health Stillbirth Prevention Act means the voices of thousands of grieving mothers, fathers, siblings and grandparents made a powerful difference for future families, and Congress and the President acted. This is a significant step in making stillbirth a maternal health tragedy of the past. Change is coming,” said Emily Price, the CEO of Healthy Birth Day, Inc., the nonprofit organization that championed the bill.

Stillbirth, which is defined as the loss of a pregnancy at 20 weeks or greater gestation, is a public health crisis in the U.S. that happens to more than 21,000 families every year. This means one in every 175 pregnancies in the U.S. ends in stillbirth. Racial disparities persist, and Black women are two times more likely to endure a stillbirth than their White counterparts. Recent reports and data suggest that further reduction in the incidence of stillbirth is possible, highlighting that at least 25% of stillbirths are potentially preventable. That reduction would translate into as many as 6,000 babies’ lives that could be saved every year when stillbirth prevention measures are in place. 

“This is a moonshot moment,” says Janet Petersen, co-founder of Healthy Birth Day, Inc. “Every expectant parent in the U.S. deserves their prenatal care to include evidence-based stillbirth prevention strategies like we have in Iowa. This bill will help make that possible.”

The annual number of stillbirths far exceeds the top five leading causes of deaths among children ages 0-14 years combined, including unintentional injuries, congenital anomalies, preterm birth, homicide, SIDS, and heart disease. Data from UNICEF comparing the United States to other countries shows that our nation can and must do more to prevent stillbirth. The 2023 report shows that in the last two decades, the U.S. stillbirth rate declined by a negligible 0.9% per year (2000-2021), putting our progress at 152nd out of 187 countries globally.

The Maternal and Child Health Stillbirth Prevention Act is endorsed by 50 maternal health organizations, including March of Dimes, ACOG, AMCHP, AWHONN, and SMFM. Full text of the Stillbirth Prevention Act is available at Congress.gov. Visit bit.ly/StopStillbirth to learn more about stillbirth prevention legislation in the 118th Congress. 

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Healthy Birth Day, Inc. Celebrates Passage of The Maternal and Child Health Stillbirth Prevention Act of 2024 at White House Event

On Monday, July 8, 2024, stillbirth prevention advocates and members of the Healthy Birth Day, Inc. team were invited to participate in a panel discussion on the stillbirth crisis hosted by the Biden-Harris Administration at the White House complex. The event coincided with the passage of The Maternal and Child Health Stillbirth Prevention Act. The panel discussion included Healthy Birth Day, Inc. CEO Emily Price, Count the Kicks Ambassador Tomkea Isaac and her husband Brandon, founders of Jace’s Journey, and Healthy Birth Day, Inc. Board Member Rose L. Horton.

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Healthy Birth Day, Inc. Founders Celebrate Progress

The five founders of Healthy Birth Day, Inc. also traveled to Washington, D.C. to attend the White House event in honor of their daughters. From left, Kate Safris, Jan Caruthers, Tiffan Yamen, Iowa Sen. Janet Petersen, and Kerry Biondi-Morlan stand outside the White House on Monday, July 8, 2024.

In the early 2000s these women came together after losing their daughters to stillbirth or infant death. They decided to channel their grief into stillbirth prevention efforts to keep other families from experiencing the tragedy of stillbirth. Their efforts created our nonprofit organization, Healthy Birth Day, Inc., and led to the launch of the Count the Kicks stillbirth prevention program in 2008. 

About Healthy Birth Day, Inc.

Healthy Birth Day, Inc. is the creator of the Count the Kicks stillbirth prevention program, which is credited with lowering the stillbirth rate in Iowa by more than 30% in the first 10 years (2008-2018). The free Count the Kicks app is a powerful stillbirth prevention tool to help expectant parents learn a simple method for fetal movement monitoring (kick counting). Healthy Birth Day, Inc. is a 501(c)(3) nonprofit organization dedicated to the prevention of stillbirth through programming, advocacy, and research. They are the primary stakeholders of The Maternal and Child Health Stillbirth Prevention Act (H.R. 4581) and a proud endorser of the SHINE for Autumn Act (H.R. 5012/S. 2657). Learn more at HealthyBirthDay.org and CountTheKicks.org. 

Senate Passes Stillbirth Prevention Act on Unanimous Consent

WASHINGTON, D.C. (June 11, 2024)- Today the bipartisan Maternal and Child Health Stillbirth Prevention Act of 2024 passed in the United States Senate on unanimous consent and is headed to President Biden’s desk for signature. This bill will add stillbirth and stillbirth prevention to Title V — the single largest funding mechanism to address maternal and child health issues in the United States. Stillbirth prevention has been left off Title V since its inception back in 1935. This change provides both clarity and a vital call to action from Congress to state health departments across the nation that they can and should use a portion of the existing $2.6 billion of Title V Block Grant funding to prevent stillbirth.

Senators Jeff Merkley (D-Oregon) and Bill Cassidy (R-Louisiana) led the legislation in the Senate. In the House, H.R. 4581 is led by Rep. Ashley Hinson (R-Iowa) and Rep. Alma Adams (D-North Carolina). It overwhelmingly passed the U.S. House on May 15, 2024, in a bipartisan vote of 408-3. 

Impact of Stillbirth in the U.S.

Stillbirth, which is defined as the loss of a pregnancy at 20 weeks or greater gestation, is a public health crisis in the U.S. that happens to more than 21,000 families every year. This means one in every 175 pregnancies in the U.S. ends in stillbirth, and racial disparities persist, with Black women two times more likely to endure a stillbirth than their White counterparts. Recent reports and data suggest that further reduction in the incidence of stillbirth is possible, highlighting that at least 25% of stillbirths are potentially preventable.

“As many as 6,000 babies’ lives could be saved every year when stillbirth prevention measures are in place. The successful passage of The Maternal and Child Health Stillbirth Prevention Act means the voices of thousands of grieving mothers, fathers, siblings and grandparents made a powerful difference for future families, and Congress acted. This never would have happened without the leadership of Senators Jeff Merkley and Bill Cassidy, and to them we are forever grateful,” said Emily Price, Healthy Birth Day, Inc. CEO. 

The annual number of stillbirths far exceeds the top five leading causes of deaths among children ages 0-14 years combined, including unintentional injuries, congenital anomalies, preterm birth, homicide, SIDS, and heart disease. Data from UNICEF comparing the United States to other countries shows that our nation can and must do more to prevent stillbirth. The 2023 report shows that In the last two decades, the U.S. stillbirth rate declined by a negligible 0.9% per year (2000-2021), putting our progress at 152nd out of 187 countries globally.

What Would the Stillbirth Prevention Act Do?

Currently fewer than 20 state health departments are using a portion of these existing funds to address stillbirth, leaving expectant parents in most U.S. states and territories more vulnerable to stillbirth. This clarification will support stillbirth prevention activities, thereby helping to save the lives of mothers and babies. Congress was not asked for additional funding associated with this legislation. 

“Getting this bill to President Biden’s desk is a huge victory for thousands of parents across the United States who have lost babies to stillbirth. I’m one of those parents,” said Iowa Sen. Janet Petersen, co-founder of Healthy Birth Day, Inc. “It’s a national call for all 50 states to make stillbirth prevention a prenatal health care priority.  It’s a moonshot to help save moms and babies and make stillbirths a maternal health tragedy of the past.” 

Endorsing Organizations

Healthy Birth Day, Inc. is proud to be the primary stakeholder of the Maternal and Child Health Stillbirth Prevention Act. The Stillbirth Prevention Act is endorsed by 1st Breath, Policy Center for Maternal Mental Health (formerly 2020 Mom), 2 Degrees Foundation, Association of Maternal & Child Health Programs (AMCHP), March of Dimes, Measure the Placenta, Mom Congress, PUSH for Empowered Pregnancy, “Reproductive and Placental Research Unit, Department of Obstetrics, Gynecology and Reproductive Sciences, Yale University School of Medicine”, Return to Zero: H.O.P.E., Society for Maternal-Fetal Medicine (SMFM), American College of Obstetricians and Gynecologists (ACOG), Every Mother Counts, Association of Women’s Health, Obstetric, and Neonatal Nurses (AWHONN), Start Healing Together, M.E.N.D. (Mommies Enduring Neonatal Death), Society for Reproductive Investigation (SRI), American College of Nurse-Midwives (ACNM), What to Expect Project, Postpartum Support International, Amniotic Fluid Embolism (AFE) Foundation, National Education Association (NEA), Association of Schools and Programs of Public Health (ASPPH), National Association of Nurse Practitioners in Women’s Health (NPWH), Maternal Mental Health Leadership Alliance, SUDC Foundation, RH Impact, the Dieudonne Foundation, and Bump and Beyond Family Services, LCC.

Full text of the Stillbirth Prevention Act is available at Congress.gov. Visit bit.ly/StopStillbirth to learn more about stillbirth prevention legislation in the 118th Congress. 

About Healthy Birth Day, Inc.

Healthy Birth Day, Inc. is a 501(c)(3) nonprofit organization dedicated to the prevention of stillbirth through programming, advocacy, and research. They are the primary stakeholders of the Maternal and Child Health Stillbirth Prevention Act (H.R. 4581/S. 2231) and a proud endorser of the SHINE for Autumn Act (H.R. 5012/S. 2657). Healthy Birth Day, Inc. is the creator of the Count the Kicks stillbirth prevention program, which is credited with lowering the stillbirth rate in Iowa by more than 30% in the first 10 years (2008-2018). The free Count the Kicks app is a powerful stillbirth prevention tool to help expectant parents be more in tune with their bodies and their babies.

Maternal and Child Health Stillbirth Prevention Act Passes House of Representatives on Vote of 408-3

Legislation Heads to Senate for Final Approval

WASHINGTON, D.C. (May 15, 2024)- Bipartisan legislation by Rep. Ashley Hinson (R-IA) and Rep. Alma Adams (D-NC) has passed the House of Representatives on a vote of 408-3. The Maternal and Child Health Stillbirth Prevention Act has the ability to immediately unleash existing Title V Block Grant funds to prevent stillbirth, an outcome happening to one in every 175 pregnancies in the U.S. Title V is the single largest funding mechanism to support maternal and child health issues in the United States. This bipartisan legislation would add stillbirth and stillbirth prevention to Title V — something that has been lacking since the introduction of Title V funding back in 1935.

In the 118th Congress, the Maternal and Child Health Stillbirth Prevention Act was introduced into the Senate on July 11, 2023, by Senator Jeff Merkley (D-OR) and Senator Bill Cassidy (R-LA) and passed the Senate without amendment by unanimous consent on Sept. 30, 2023. 

“The deafening silence of a baby born still echoes through hospitals across our country 65 times every single day. Stillbirth is a public health crisis, with more than 21,000 babies born still every year in the United States ― the annual number of deaths far exceeds the top five leading causes of deaths among children ages 0-14 years combined, including unintentional injuries, congenital anomalies, preterm birth, homicide, SIDS, and heart disease,” said Emily Price, Healthy Birth Day, Inc. CEO. “This legislation says we can end preventable stillbirths. Words cannot express our gratitude to Congresswomen Ashley Hinson and Alma Adams for their leadership on helping make stillbirth a maternal health tragedy of the past.”

The Impact of Stillbirth in the U.S.

Recent reports and data suggest that further reduction in the incidence of stillbirth is possible, highlighting that nearly 25% of stillbirths are potentially preventable. The number of stillbirths in the U.S. is higher than the number of babies that die during the first year of life and more than ten times the number of babies that die annually due to sudden infant death syndrome (SIDS). Data comparing the United States to other countries shows that our nation can and must do more to prevent stillbirth. In the last two decades, the stillbirth rate in the United States declined by a negligible 0.4 percent, and, in a report published by the World Health Organization comparing progress in improving stillbirth rates, the United States ranked 183 out of 195 countries.

Stillbirth Prevention Act Provides Clarity for States

The Maternal and Child Health Stillbirth Prevention Act will provide both clarity and a vital call of action from Congress to state health departments across the nation that they can and should use a portion of the existing $2.6 billion of Title V Block Grant funding to prevent stillbirth. Currently fewer than 20 state health departments are using a portion of these existing funds to address stillbirth, leaving expectant parents in most U.S. states and territories more vulnerable to stillbirth. This clarification will support stillbirth prevention activities, thereby helping to save the lives of mothers and babies. Congress was not asked for additional funding associated with this legislation. 

“The passage of the Maternal and Child Health Stillbirth Prevention Act in the U.S. House is a significant milestone, as it signals a turning point where stillbirth is no longer overlooked. Families like mine affected by stillbirth can now find solace in knowing their voices are heard,” said Tomeka Isaac, a North Carolina Count the Kicks Ambassador whose son Jace should be celebrating his sixth birthday on Wednesday [May 15]. 

Endorsing Organizations

The Maternal and Child Health Stillbirth Prevention Act is endorsed by Healthy Birth Day, 1st Breath, Policy Center for Maternal Mental Health (formerly 2020 Mom), 2 Degrees Foundation, Association of Maternal & Child Health Programs (AMCHP), March of Dimes, Measure the Placenta, Mom Congress, PUSH for Empowered Pregnancy, “Reproductive and Placental Research Unit, Department of Obstetrics, Gynecology and Reproductive Sciences, Yale University School of Medicine”, Return to Zero: H.O.P.E., Society for Maternal-Fetal Medicine (SMFM), American College of Obstetricians and Gynecologists (ACOG), Every Mother Counts, Association of Women’s Health, Obstetric, and Neonatal Nurses (AWHONN), Start Healing Together, M.E.N.D. (Mommies Enduring Neonatal Death), Society for Reproductive Investigation (SRI), American College of Nurse-Midwives (ACNM), What to Expect Project, Postpartum Support International, Amniotic Fluid Embolism (AFE) Foundation, National Education Association (NEA), Association of Schools and Programs of Public Health (ASPPH), National Association of Nurse Practitioners in Women’s Health (NPWH), Maternal Mental Health Leadership Alliance, SUDC Foundation, and RH Impact.

The Maternal and Child Health Stillbirth Prevention Act of 2024 will return to the U.S. Senate for final approval so that it can be sent to the President’s desk to be signed into law.

Full text of the Stillbirth Prevention Act is available at Congress.gov. We encourage everyone to visit bit.ly/StopStillbirth as an easy way to learn more about stillbirth prevention legislation in the 118th Congress. 

About Healthy Birth Day, Inc.

Healthy Birth Day, Inc. is a 501(c)(3) nonprofit organization dedicated to the prevention of stillbirth through programming, advocacy, and research. They are the primary stakeholders of the Maternal and Child Health Stillbirth Prevention Act (H.R. 4581/S. 2231) and a proud endorser of the SHINE for Autumn Act (H.R. 5012/S. 2657). Healthy Birth Day, Inc. is the creator of the Count the Kicks stillbirth prevention program, which is credited with lowering the stillbirth rate in Iowa by more than 30% in the first 10 years (2008-2018). The free Count the Kicks app is a powerful stillbirth prevention tool to help expectant parents be more in tune with their bodies and their babies. Learn more at HealthyBirthDay.org and CountTheKicks.org. 

After her son James was born still, Kathleen turned to running to channel her grief into something positive

Kathleen McCoy is a Chicago-area stillbirth prevention advocate who is working in honor of her son James. Last year Kathleen and her husband Adam learned James’ heart had stopped beating when they went in for their scheduled C-section. After James was born still, Kathleen turned to running to channel some of her grief into something positive. She found that running helped, and decided to start training for her third marathon, which she completed in October in honor of James.   

She chose the Marine Corps Marathon in Washington, D.C. because it holds a special place in her heart. Her beloved son James is named after her father James, a U.S. Marine Veteran who is buried at Arlington National Cemetery, where the marathon ended.

Kathleen decided to raise funds for Healthy Birth Day, Inc. in conjunction with the marathon, and so far her fundraising efforts have contributed more than $14,000 to help us further our mission to save babies. 

Kathleen shares more about running the marathon in honor of James, and her hopes for the future of stillbirth prevention. 

What made you decide to run a marathon and ask friends and family to support you? 

Ever since James passed, I knew I wanted to do something where I felt like I was making a difference – where I could channel some of the anger and negativity into something positive. The marathon and fundraising gave me the space to do that! 

Fundraising helped me with my determination to complete the long runs and marathon, knowing I wasn’t just doing it for me but for a greater good. Fundraising for the marathon also allowed me to feel comfortable sharing my story on a deeper level, to raise awareness about the stillbirth crisis, to raise awareness about Count the Kicks, and to continue to have my son’s legacy live on. Ever since I sent out the fundraising email, multiple people have told me that they have told others about Healthy Birth Day, Inc. and Count the Kicks, which I am so grateful for!

Why did you choose to support Healthy Birth Day, Inc.? 

Healthy Birth Day, Inc. (HBD) has been instrumental in my healing. I have such gratitude for HBD. Being a part of the advocacy work has allowed me to have space to tell my son’s story – to have his legacy continue on. The advocacy trip to Washington, D.C., helped me personally feel like I was contributing to a greater good – and that something good could come from something so painful. 

After the advocacy trip, I knew HBD is who I wanted to fundraise for because HBD IS making a difference for people like me. HBD is talking about stillbirths. HBD is advocating for families like me. And the people at HBD care and want to support people like me.  

I find the passion that the team at HBD has inspiring and incredibly moving. I believe the work that HBD does saves lives and will prevent future families from experiencing the heartbreak my family has – that is so powerful to me personally!

How has running helped in your grief process? 

Being physically active has always been something important to my mental health, but after I lost James, running became that much more important – it was my escape. Running has been a safe space for me to process and reflect on everything in a safe space. 

Some days, especially in the beginning, when I was feeling a lot of negative thoughts, I would go for a run.  During the run, if I felt myself becoming fixated on negative thinking, I would take off and run faster! I would come home exhausted, but with a lighter mind and body.

Running has helped me to feel stronger both inside and out.  Running has helped to ground me. 

What do you hope happens with stillbirth prevention in this country? 

I hope that people continue to talk about stillbirths and continue to elevate this crisis so that fewer families experience what mine did. My hope is that providers start talking with patients more about fetal movement monitoring and incorporating more preventive measures into prenatal care so that less families experience this heartbreak. Also, I hope that by talking about stillbirths more, families who have experienced a stillbirth or who do in the future, can feel less alone. 

What is the total amount donated to Healthy Birth Day, Inc.? 

My friends and family donated a total of $7,000 and Microsoft (thanks to my sister) matched it dollar for dollar, bringing the total to $14,000.

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Kathleen and her husband Adam Wilson shared their story with WGN Chicago. Learn more about their advocacy efforts in honor of their son James.

You Are Your Baby’s Best Advocate: How to Speak Up to Your Provider

It was a Saturday morning when I noticed our son’s movements had changed. My husband and I were getting ready to leave to purchase a more family-friendly car. I drank orange juice. I drank ice water. I laid on my side. I Googled. After feeling his strong kicks for weeks, I dreamed he would be a soccer star, but suddenly his movements had become slow and weak. 

Instead of calling my provider, I cried silently, brushed my feelings away as “just my anxiety,” and went shopping for a new car. 

By Monday evening at 11:07 p.m., our son, Richard, was born. He had suffered a fetal maternal hemorrhage (when fetal blood cells pass into the mother’s bloodstream). The NICU team whisked him away, but it was too late. With my husband by his side, he died just an hour later. 

For the last six years, I have replayed that final weekend in my mind. What should I have done differently? Would it have made a difference if I had called my doctor? What would my life look like now if I had spoken up? 

When I became pregnant again, I vowed to no longer be silent. I could not save my son, but I could fight to have a safe delivery for my daughter. I recognized that, as her mother, I was her only voice. 

Here is how I communicated effectively with my provider that made me feel comfortable and confident during pregnancy after loss. 

1- I Knew the Plan

My doctors were caught off guard when Richard died, so I wanted to make sure that a plan was in place for my next pregnancy. My husband and I had a preconception consultation with my Maternal Fetal Medicine (MFM) specialist to discuss my next pregnancy. He explained his role, how he would communicate with my OB, what kinds of monitoring that would take place, when the monitoring would occur and at what frequency, the potential complications, and the potential plans depending on how the pregnancy progressed. Before we even became pregnant again, I felt comfortable because I knew that everyone was prepared. 

2- I Knew What I Needed and Asked for It

I knew that I would be anxious for the entire pregnancy — from the positive test to entering the OR for delivery. When I became pregnant again, I made these concerns clear to my provider. I wanted to be more vocal in my care this time.

With Richard, I worried too much about being an annoying patient or one that was bothering the doctors. With my daughter, I knew that I was her staunchest advocate, so I needed to speak up for both her and myself. 

When I wanted clarification on test results, I called the office. When I questioned a new symptom, I called the office. When I worried about my daughter’s movement, I called the office. I did not hesitate, and I was persistent. 

3- I Wrote Down Questions and Kept Notes

Since I was seeing multiple doctors, I knew that I needed to keep a good record of my appointments and new information. In between appointments, I kept a running list on my phone of every question I thought of. If I didn’t do this, I would completely forget by the time I saw my provider. 

At each appointment, I kept brief notes of new information. Although my doctors promised to communicate with one another, there were times when information was either miscommunicated or not sent at all. These were the times that I was thankful for my notes. I was able to ensure that everyone was on the same page. 

4- I Was Not Rushed at My Appointments

Doctors are incredibly busy, and before losing Richard, I would allow my appointment to be rushed. I never wanted to inconvenience anyone. However, with my daughter, I ensured that every question I had was answered and every concern I had was addressed. I knew how valuable this time with my provider was, and I wanted to feel comfortable before leaving the office. 

5- I Used the Count the Kicks App

Unfortunately, I did not know about Count the Kicks with Richard. My MFM told me about the campaign and taught me how to use it to correctly track my daughter’s movement.

Since I was a high-risk pregnancy, I began counting kicks using the app at 26 weeks. I watched the graph of her movement develop each week. If her movement changed at all, I immediately went to the hospital for monitoring and called my doctor. Count the Kicks gave me a sense of confidence as I navigated pregnancy after loss. I could speak up for myself and use the app’s graph as evidence to support my claims.

You Know Your Body Best

Finally, the best piece of advice that I could give to anyone navigating pregnancy or pregnancy after loss is that you know your body best. You have the closest relationship with your baby, and if you have a concern, you should speak up! Using the Count the Kicks campaign and app can help you communicate effectively with your provider. 

Editor’s Note: Research shows that fetal movement is best monitored without interventions like juice, candy, or drinking ice water.

Author Bio: Jackie Mancinelli is a high school English and ESL teacher in New Jersey. She is the mother to two girls, ages 2 and 4, and a son, Richard, who passed away in 2016. She is the founder of Start Healing Together, an organization dedicated to supporting educators experiencing pregnancy loss and infertility. She is also a New Jersey Ambassador for Count the Kicks.