Getting Stillbirth on the Global Agenda, and Implications/Lessons Learned for the Stillbirth Community in the USA

Ms. Leisher has disclosed that she does not have any real or perceived conflicts of interest in making this presentation.

Kristen Ewing: Susannah Leisher is the chair of the International Stillbirth Alliance, co-chair of the Stillbirth Advocacy Working Group that was founded by the WHO’s Partnership for Maternal, Newborn and Child Health. A member of the Every Newborn Action Plan Management Team, and a fellow at the Stillbirth Centre for Research Excellence at the University of Queensland in Australia. She’s also a doctoral student in epidemiology at Columbia University. Her dissertation focuses on structural racism as a cause of racial inequity in stillbirth rates and methylation of stress-related genes as a mechanism by which maternal stress may increase the risk of stillbirth.

Before moving to epidemiology, Ms. Leisher spent 25 years working on global poverty alleviation in Asia, Africa, and Central America, including 10 years working and living in Vietnam. She holds master’s degrees in economics and epidemiology from John’s Hopkins University in the London School of Hygiene and Tropical Medicine. Ms. Leisher is the mother of three living sons, and Wilder Daniel, her first child who was stillborn in 1999 after a perfect pregnancy, with no cause ever found. Her presentation is titled Getting Stillbirth on the Global Agenda, and Implications/Lessons Learned for the Stillbirth Community in the USA.

Susannah Leisher: Hi, I am going to share my screen and begin my slideshow. Thank you so much on behalf of the International Stillbirth Alliance for the invitation to speak today. I will be talking about getting stillbirth on the global agenda, and implications for the US. Here is why I care about stillbirth. This was me in 1999, very pregnant and excited for my first child, and here is me on July 13th, ’99, after the stillbirth of my son, Wilder Daniel, at full term, after a perfect pregnancy with no cause found. I do this work for my son Wilder.

I love this word cloud. This is from our conference badges from the ISA conference in Cork, in Ireland 2017. It sums up how we felt and still feel about stillbirth. How passionately we feel. Here is how the rest of the world sees stillbirth. This is the famous word cloud from The Lancet’s 2016 series on ending preventable stillbirths. It includes the 500 most commonly used words in a collection of key global health documents. You can see how the maternal and child health community still makes stillbirth invisible. What’s one thing that you could do? Come up with a powerful graphic like this one that sums up the invisibility of stillbirth in the US?

This graph is called the bending the curve chart. In 2014, the World Health Assembly adopted a resolution to end preventable newborn deaths and stillbirths. That was the very first global stillbirth rate target. The aim was to reduce all countries stillbirth rates to no more than 12 per thousand. The chart is also from The Lancet’s 2016 series, and so it’s a bit out of date. You can see that the line is pointing downward. That’s a good thing, but the decrease was not fast enough in 2016. To reach the global stillbirths rate target by 2030, the rate of reduction would’ve had to more than double.

How are things looking today? In some ways they’re a lot better. There’s been a 35% cut in the stillbirth rate since the year 2000, but progress is slowing down and it’s still worse than progress on under five mortality. In 2020, 56 countries are not on track to meet the global target by 2030, and 34 of them won’t even meet it by 2050. Only 14 countries cut their stillbirth rates in half, and 80 countries had reductions of less than 25%, much less than the global average. That include the US. What’s one thing that you could do? Find out how the stillbirth rate in your state compares to mortality rates for other groups. The infant mortality rate is a good place to start. Why are there differences and how can your state do better?

Other than our shared humanity, why do we care about the global target rate? After all, the US national rate is already below the target? Here’s one reason. The stillbirth rate for African Americans today is the same as for white Americans 40 years ago. That is obviously unacceptable. At a national level, we’re doing as well. The US stillbirth rate of three per thousand, and that’s using the global definition of 28 weeks or more, puts us behind 33 other countries.

Globally, there’s huge disparity on progress on stillbirth reduction. You can see here that the best performers in terms of reducing their stillbirth rates are actually some of the lower income countries, Turkey and China had the fastest reductions at 5.3% per year. In contrast, the US average rate of reduction was just 0.5%. We were therefore at number 182 out of 195 countries that were assessed. What’s one thing you could do? Find out what action you could take in your own state to push to match the progress of Turkey and China.

We can see that progress is possible just by looking at these statistics. Globally, millions of babies’ lives could be saved between now and 2030 if each country reaches the high-income country average of three per thousand, which is where the US is now. What if your own state or community reached that goal also? That’s called a subnational target, and it’s part of what we advocate for globally.

What’s one thing you could do? Calculate how many babies could be saved if your state or community could reach the lowest known stillbirth rate by 2030, that’s Japan, 1.4 per thousand. Get on social media to make the case that even though the US has one of the worst track records of any country on reducing the stillbirth rate, you believe we can and must do better.

As many of you know, The Lancet’s Ending Preventable Stillbirth Series, put out a call to action for stillbirth prevention and support in 2016. The call to action includes the global stillbirth rate target of 12 per 1000, but it calls for more than just that. We call for all countries to set targets, to reduce inequity in stillbirths rates within their borders. That’s the subnational target. Then meet those targets. We call to extend family planning services and ensure high quality reproductive and pregnancy care for all women to achieve a global consensus on bereavement care after stillbirth and help end stigma.

ISA created a global scorecard to track progress against the call to action. I know you can’t read all the text in that small graphic, but you can see all the red, so you know it’s not good. What’s one thing you could do? Compare the call to action to progress in your own state or city and decide what’s most important for stillbirth prevention and support in your own community.

The call to action was needed because preventable stillbirths and poor-quality bereavement care are still happening. There’s progress, but as we just saw, the progress is too slow. To speed up, we need to understand what’s holding us back. I really like this framework. It’s by Jeremy Shiffman. It outlines the factors that tend to help or hinder global attention to public health issues. The framework has been used to better understand maternal deaths and newborn deaths, and I think it’s also really useful for understanding what’s going on in stillbirths.

We all know that one factor that’s holding us back on progress is lack of high-level political interest in stillborn babies. Sad, but true. Why is this? The harsh reality is that progress on stillbirth is slow in part because all over the world, it’s marginalized and disempowered more likely to be stillborn. By far, the largest number of stillbirths occurs in low- and middle-income countries. 340,000 babies are stillborn every year in India alone, and another 650,000 in Pakistan, Nigeria, Congo, China, and Ethiopia.

As many of us know from personal experience, stillbirth is not only a low- and middle-income country issue. In every country, whether high or low income, stillbirths occur more often among the marginalized. In Ireland, babies in the poorest regions there are over three times as likely to be stillborn as babies from wealthier regions. In Australia, indigenous families are one and a half times more likely to suffer a stillbirth.

In the US, as I already mentioned, non-Hispanic Black Americans have a rate of stillbirth that is more than twice as high as white Americans. What’s one thing you could do? Find out what the biggest disparities in stillbirth rates are in your own state. They may be along racial lines or nationality, poverty, or other things, then figure out how to use that data to demand change.

Progress on stillbirth is also hampered because of the taboo on talking about it. Talking about live babies is okay. Talking about dead babies, not so much. Too often, stillborn babies are dehumanized, stigmatized, viewed fatalistically as unpreventable, ignored, and marginalized. Stillbirth babies become invisible. It’s really hard to make progress on a global public health issue when you can’t even talk about the subject. What’s one thing you could do? Strategize about how to make headway in reducing stigma about stillbirth in your own community, and then take action.

Global norms determine how people interact, behave, decide things, even how they think, and they set the tone for what matters both globally and locally, politically and personally. For stillbirth prevention, global norms have been a powerful force. In the year 2000, the Millennium Development Goals left out stillbirth. In the year 2015, the Sustainable Development Goals also left out stillbirth.

This is the cover of the Global Strategy for Women’s, Children’s and Adolescents’ Health. It implements the Sustainable Development Goal number three, which is the health related one. As a crude measure of the insufficient attention to stillbirth, the global strategy mentions the word child over 300 times, the word stillbirth, a grand total of six times.

However, there has been progress. The global stillbirth community had a big win during negotiations about indicators to measure implementation of the global strategy. The stillbirth rate does appear as an indicator of progress right along with the maternal, under five, newborn, and adolescent death rates, even though it’s not in the SDGs. More recently, the Every Newborn Action Plan, which is the platform that set out the global stillbirth rate target, set forth new targets for 2025 that strongly reflect action on stillbirth. Just last October, UNICEF and WHO launched the first regular country specific stillbirth rate estimates, which is fundamental for tracking progress, but it took a long time.

All global public health issues exist within a cultural and historical context. A key component of that rich context is the history of human rights work, which started in 1948 with the universal declaration of human rights and continued in the ’50s and ’60s with other key declarations on the rights of the child and the elimination of all forms of racial discrimination. These may seem not to be directly related to stillbirth prevention, but they really are. It’s through global agreements like these that global norms on what is and is not acceptable slowly begin to shift.

In 1978, the landmark conference on child health that was held in Alma Ata in Kazakhstan focused global public health attention for the first time on the grave importance of reducing child deaths and improving child healthcare. That conference marked a shift in global attention. The same thing happened in 1987 at the first world conference on safe motherhood that was held in Nairobi in Kenya. It had a huge impact on global public health attention to the burden of maternal deaths.

In the last 20 years, global norms on maternal and child deaths as both unacceptable and preventable and on human rights as universal have been stained and strengthened. A new focus on newborn survival and prevention of newborn death and prematurity has begun to grow. The capstone of this shift in global norms was the 2014 World Health Assembly resolution in support of the Every Newborn Action Plan, which as you now know, set the global target rate. That occurred just seven years ago.

Stillbirths have indeed lagged behind. The first global stillbirth rate estimate was only done in 2006, and the first country specific estimates in 2011. It was just one year ago, less than a year, that the world finally agreed to collect this data. What’s one thing you could do? I think it would be great to create a timeline of US historical progress on stillborn. I think it could be put to very good use.

Another key factor that holds back progress on stillbirths relates to its preventability, which is pretty ironic. Detection and treatment of syphilis, hypertension, diabetes, and fetal growth restriction, folic acid supplementation, and induction at 41 weeks together with emergency obstetric care are some of the widely known and medically accepted practices that can prevent most stillbirths.

Stillbirths can also be prevented by a wide variety of other interventions from reducing exposure to smoking and environmental toxins to preventing child marriage and domestic violence. Policy interventions, including access to birth control can also help. In 2011, this estimate found that well over 1 million stillbirths a year could be prevented with these known interventions.

That’s still true today. Here’s a graph from the UNICEF report from last October, showing that still over 40% of all stillbirths occurred during labor and delivery. Those are intrapartum stillbirths. Virtually all of these could have been prevented. Even in high income countries, about 6% of stillbirths are still intrapartum.

That’s about 700 a year in the US or 2 per day.

We know the low rates of stillbirth are possible because we see them in other high-income countries, but high rates among disadvantaged groups and areas in the US, that’s part of what drives our unacceptably high national stillbirth rate. This summary from The Lancet shows key factors that contribute to high stillbirth rates in disadvantaged populations, including poor access to care and lower quality care.

I don’t think there’s been enough attention to systemic factors. By which I mean structural racism, inequity, fatalism that’s ingrained in many in the medical professions and the power imbalance between doctor and patient. What’s one thing you can do? Acknowledge structural racism as a cause of higher stillbirth rates in Black Americans and other marginalized populations, and get the data needed to call for change in your state or community.

Unfortunately, we still face an uphill battle against fatalistic attitudes of many caregivers and health policy makers around the world who still do not know that most stillbirths are preventable and still think that most stillborn babies were never meant to live. What’s one thing you could do? Find out how health workers are taught about stillbirths in your own state and identify gaps that might be perpetuating fatalism in your own healthcare communities. Then take action.

One result of fatalism and stigma is insufficient funding and research into causes. This global survey of how half a million stillbirths found 860 terms used for causes of stillbirth, but still one third were unexplained. This report from the US Department of Health and Human Services found that a third were unspecified, even though 3000 codes were used for cause of death. Even in this study from the National Institutes of Health that was purposely built to identify causes of stillbirth found no cause in one quarter of them. What’s one thing you could do? Find out much is being spent on stillbirth research in the US and use that data to call for change.

Is there anything in our favor in the fight against stillbirth? Sadly and ironically, the strongest factor in our favor is just how bad it actually is. The global burden of disease has quantified morbidity and mortality for 30 years, helping to spotlight public health shortcomings and focus investment on the biggest gaps. In 2019, 5 million children died before their fifth birthday of whom one quarter were newborns, but in 30 years, the global burden of disease has not included stillbirths. If the 2 million stillbirths were included, this pie chart would look very different with stillbirths comprising nearly one third of deaths of children under five.

Another way to think of it, it’s not totally legitimate since I always say that stillbirth is a time of death, not a cause. However, I think it’s really interesting that out of all 59 million deaths around the world in 2015, if we included stillbirths, 4% are stillbirths. In fact, if stillbirths were momentarily viewed as a single cause of death grouped together, they would be the fifth leading cause of death worldwide.

In the US, more than half of all deaths before, during, and soon after birth are stillbirths. What’s one thing you could do? Find out the rates of stillbirth compared to newborn death in your own state and see whether you think that health budgets and policies reflect the picture that your data shows.

When I reviewed Shiffman’s framework to adapt it to stillbirth, I found that it was really comprehensive with one exception. As happens all too often, there was no place in the framework to mention us, parents. We know the story, as with stillbirth, generally, parents who are bereaved by stillbirth are usually invisible. At most, it’s our grief that might be acknowledged. Parents are also experts and allies.

This is Christine Wangechi. She’s a 36-year-old accountant and a mom of two. An 11-year-old son and a baby who was stillborn at 32 weeks on September 22nd, 2019. I’m really proud that the International Stillbirth Alliance was able to make space for Christine to speak her truth at the global launch of the first ever regular stillbirth estimates by the United Nations.

You can see Christine in the red box next to key speakers from UNICEF, the Gates Foundation and various national ministries of health. Christine shared her story and called for action. What’s one thing you could do? Change the way the research and clinical community views parents by treating us as experts and allies, not victims or afterthoughts. Give us state and national platforms to say what we know.

A final factor that’s hindered progress is the sparse global network for stillbirth prevention. For The Lancet’s ending preventable stillbirth series in 2016, we conducted an analysis of global networks from maternal health, newborn health, and stillbirth. Here’s a map of what those combined networks look like. Here’s the map for stillbirths alone. Without going into the details, you can see that it’s very sparse. There were many missed opportunities for collaboration.

As chair of the ISA, I really want to make a pitch to each of you to consider joining us. This map shows the locations of our members and some of our activities. We are honored and strengthened by every parent, family member, clinician, and researcher who joins us because we’re trying to connect the world.

I was supposed to provide some lessons learned, and here are some of them. Change cannot happen if we aren’t talking. Use social media, convent media, talk with your friends and family, talk with your doctors about stillbirth. Inequity in health outcomes will not change without systemic improvements, including ending structural racism. Think big and take a stand. Visuals are powerful. Show the invisibility of stillbirth in your community. Learn about and leverage politicians’ commitments for better public health.

Benchmark and publicize progress against the best global performers. Demystify acronyms, platforms, global organizations and plans so you can use them to call for change. Create a silver scorecard for your state, county or hospital, and use it to call attention to gaps in quality and outcomes. Call for harmonization of state data collection and revision of federal fetal death certificates.

Midwives, obstetricians, and other health professionals are allies. Build bridges, and lobby to provide them with bereave and care training and funding to train more perinatal pathologists. Campaign for funding for more research, for high quality perinatal audit and autopsy and placental histopathology for all parents. Take every opportunity to provide state and national platforms for regular parents to call for change.

Most of all, take the long view. It’s been a long haul since 1948, but change is possible. Real systemic change takes decades because we have to get at the underlying root causes of what’s perpetuating preventable stillbirth. Really what I hope you’d come away with from my talk today is that there are things that we can do to make a difference, whether that’s nationally in Washington, in your home state, or in your local hospital clinic or of friends and neighbors. Just please make sure to talk about it. Thank you so much.

This presentation was part of the Stillbirth Summit 2021.   This individual lecture will be awarded .5 hours of continuing education credit to include viewing the lecture and completing evaluation and post-test.  Once received a certificate will be emailed to the address you provide in the post-test.  If you did not register for the Summit WITH Continuing Education, you can purchase the continuing education by clicking here.  This purchase will provide you access to all Stillbirth Summit 2021 lectures including continuing education credit. There is no charge for viewing the presentation.

To receive continuing education credit for this lecture, the participant must complete the evaluation and post-test.