This month, Ally and Kyle Shaw will celebrate the birthday of the little girl they never got to bring home from the hospital.
“You know, we’re a family, but we don’t have a child to take care of,” Ally Shaw shared. “It’s an unbearable loss. I mean, it’s devastating.”
At Ally’s 20-week anatomy scan, their daughter, Gemma Hope, was found to have bilateral multicystic kidney dysplasia, a terminal diagnosis. Just weeks later, Ally went into preterm labor.
“She was born November 4, and she lived two days in the NICU under their careful watch,” Shaw said. “The first time I got to hold her, it was also the last. And so we’re so thankful for the short time that we had with her; but it’s our world, you know, she is our world, and we miss her every day.”
In Gemma Hope’s memory, the Shaws have become advocates for families who find themselves navigating this unspeakable loss.
“This is real; it does happen,” Ally said, “What can we do to prevent it? And what can we do to support those who are going through it?”
Early 2022 numbers show infant mortality rates in both Carolinas decreased from 2021, but they’re still higher than the national average. The top causes include birth defects, preterm birth, and low birth weight. And racial disparities in both Carolinas are disturbing.
“We need to, as a society, really wrap our arms around the most vulnerable, and it reflects on our well-being as a culture and a society,” said Dr. Lewis Lipscomb, who leads the Women’s and Children’s Institute for Novant Health.
“The racial disparity is real, and it’s something that, until really the last three or four years, was not really called out or acknowledged. So that’s unfortunate,” Lipscomb said.
“Visibility into that is a huge first step to acknowledging the problem and then digging together to figure out how we can close the gap in infant mortality. Right now, black infants are over twice as likely to die in their first year of life.”
Lipscomb said in the last two years, their system has poured efforts into educating staff on implicit bias, putting this data in front of staff, and screening for social issues like food insecurity that impact overall health. They’re also ensuring women coming into ERs and urgent care who find they are pregnant are connected with proper care.
“From the obstetric span, which is my background, that prenatal care piece is really, really important. There is a big gap in women achieving prenatal care,” Lipscomb said.
Getting that care can be a challenge for some people.
“This is a really complex problem, but from a policy perspective, we need to be really intentional about ensuring that people are insured,” Lipscomb said.
Access in rural communities can be particularly challenging. According to South Carolina Health officials Channel 9 spoke with, 14 counties in the state are without a single obstetric provider.
“Maternity deserts are a big deal for any state that has rural swaths, and North Carolina is no exception. South Carolina is certainly no exception,” said Lipscomb.
He expects the upcoming Medicaid expansion in North Carolina to make a difference.
“The gaps that are the most obvious are barriers to care, such as insurance coverage; thankfully, we’ve recently passed Medicaid expansion, which should bring more people to the table to be able to achieve a higher level of care,” Lipscomb said.
South Carolina has not expanded Medicaid, but the state extended Medicaid coverage to qualifying postpartum women for 12 months, an increase from 60 days. A spokesperson for the South Carolina Department of Health and Environmental Control said that it “has improved access to care for new mothers across South Carolina.”
Sadly, not every infant death can be prevented.
But after Shaw’s experience, they encouraged other families to be their own advocates.
“Be observant and listen to the mother,” said Kyle.
“These are numbers that impact whole communities,” Ally shared. “And I think that’s the part that people have to recognize.”
The Shaws started Gemma’s Hope to provide practical resources and hope after pregnancy and infant loss. They share everything from help finding a therapist to how to donate breast milk. They also have created book carts with resources that are rolled into patient rooms at NICUs at Atrium and Novant. It’s all information they say they wish they had when they lost Gemma.
We spoke extensively with health officials in both North and South Carolina about the issue. All experts Channel 9 spoke with emphasized the importance of the health of the mother prior to pregnancy and prenatal care.
“We know infant mortality is viewed as one of those kinds of basic principles in how we treat our citizens in our state,” said Belinda Pettiford, the section chief for Women, Infant, and Community Wellness with the North Carolina Department of Health and Human Services.
“And if our infant mortality rate is high, and we’re really looking at our most vulnerable population as our infants, if we’re not doing the best we can to try to make sure those rates are as low as possible and that we’re dealing with the disparities, what does that say about how we treat everyone else?”
Pettiford shared a handful of programs underway to address the issue. Many are not statewide because of funding. They’re hoping for more resources to expand the Healthy Beginnings Program, specifically. It’s the state’s minority infant mortality reduction program. They’ve seen very few infant deaths among those participating. It’s currently in ten communities.
“There’s a lot of activity in North Carolina; are we doing enough? We will say probably not, because we don’t feel like we’re doing enough until we can see that our overall rates continue to come down. And our disparity rate ratio comes down as well,” said Pettiford.
There are various other committees and programs at work, and she said officials are looking at the whole picture. For example, social factors like food insecurity, intimate partner violence, transportation, and housing impact infant mortality.
Pettiford said they’re excited about the impacts of Medicaid expansion in the state. “There’s really good research that shows improvement in outcomes for those states that have actually expanded Medicaid.”
Also, a recent North Carolina Senate bill increased the Medicaid reimbursement rate for providers who treat pregnant patients, and she said the state Medicaid agency has been supportive of trying to elevate some of the work around reimbursement for doula services.
In North Carolina, there’s a Perinatal Health Strategic Plan and the NC Perinatal Health Equity Collective which is always looking for interested members.
We also spoke with Kristen Shealy, Deputy Director for the Bureau of Maternal and Child Health at the South Carolina Department of Health and Environmental Control. Shealy says they’ve re-launched the birth outcomes initiative, which pulls experts from various disciplines in the state to look into the problem. They’re re-establishing the Fetal Infant Mortality Review Committee, which will look further into root causes and fill data gaps.
As they assess the impacts of providers leaving rural communities, they’re working on recruitment and retention for health care providers there. They’ve also increased education about Sudden Infant Death Syndrome (SIDS) after seeing an alarming increase from 2020 to 2021. Officials have also re-launched the ‘Count the Kicks’ campaign to help parents track normal baby development.
“Almost 50% of pregnancies are unplanned; you know, sometimes it is hard to plan for those pregnancies,” Shealy told us, speaking to the importance of regular health screenings for women before proper prenatal care. “Preventive care is of great importance, making sure that the mom is receiving those preventive care visits annually.
On infant mortality, Shealy said it’s “very multifactorial, and it’s hard to pinpoint the cause for any one reason.” But she emphasized why everyone should care about this.
“Infant mortality really has been a long-standing indicator of the overall health of a population, so I think that it’s a very important marker. And you know, the loss of a new life is devastating, not only to that family but also to the community.”
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