Prematurity is the largest cause of infant mortality. A recent March of Dimes report card issued Louisiana a failing pre-term birth grade.

“Infant mortality rates are an indication of overall health. Leading causes of infant death include birth defects, prematurity, low birth weight, maternal complications and sudden infant death syndrome,” the report states.

Black women account for the largest number of pre-term births at 55% higher than the rate among all other women.

“It’s what happened to my son,” Novod said. “He was born prematurely, and he died. When I went through the journey, I just thought, ‘gosh, I must be the unluckiest person in the world.’ You know, like, what did I do to cause this? And the more I started to learn and grow in my advocacy, I realized that it was not my fault and it was happening every day, multiple times a day across my community. And this story was repeating itself.”

Novod points to research that proves Black women have worse outcomes than white women, regardless of varying backgrounds.

“It doesn’t matter our level of education. It doesn’t matter our socioeconomic status. It doesn’t matter,” she said. “If we have healthcare or Medicaid, it just doesn’t matter. And so that to me was really sort of soul-crushing. The fact that we have this high prematurity birth rate, we’ve had it for years, it’s impacting historically marginalized families and everybody is just moving on and acting like it’s normal. There is nothing normal about prematurity. There is nothing normal about the NICU. There is certainly nothing normal about burying your baby. That experience broke me and I know that it’s doing it to women in my community every single day. And I’m not okay with that.”

Novod points to systemic racism as a starting point for issues she’s seen with infant mortality.

“Black women are 55% more likely to give birth prematurely because of systemic racism,” she said. “We have to name that. We have to talk about all the reasons why that is inadequate: prenatal care doctors, not listening to Black women and Black women and Black babies bearing the brunt of that. We have to talk about environmental injustice. We understand that disparities and birth outcomes continue to exist because of systemic racism and implicit and explicit bias, so we are victims of that. When you realize that racism could be the reason why your baby died, it does something to you. You are never the same and you hopefully get angry.”

She calls it righteous anger.

“Do I feel that our birth outcome would have been different if I had been listened to? Absolutely,” Novod said. “And so that’s why we talk to women in our local community about recognizing the signs of pre-term labor and knowing that when you have to trust your instincts when something doesn’t feel right, you need to go and get it checked out. We have to be our best advocates and we have to be our baby’s best advocates.”

Novod said studies show that babies whose parents are present in the NICU have better outcomes, but there are barriers to many families being available regularly.

“While we were all on this journey together, the fact that we were all experiencing it differently, did not sit well with me,” Novod said. “Our core belief as an organization is that every family deserves to be present bedside and involved in their baby’s care. And the reason why we feel that way is because babies whose parents are present and involved in their care have better health outcomes. So, it’s sort of like if you’re there, if you’re present and you’re asking questions, you’re doing skin to skin and you’re pumping, that begets good health, right? Your baby gains weight faster, your baby is probably going to be discharged sooner. You’re going to be a part of shared decision-making and that is going to help your baby ultimately get out of the NICU. But it’s also gonna change the experience that you have, right?”

Challenges families face include work schedules, other family and home obligations and financial disarray among other things. The NICU experience is also traumatic, Novod said.

“I don’t think that we can see all the problems or challenges that we have to name them all without looking for the root causes of those challenges,” she said. “We have issues with perinatal mental health and suicide, which is a big cause of women dying after they have babies. We have to understand what is happening to women, not just to women, but just people in our community period, and how these experiences impact them when you’ve gone through something as traumatic as the NICU journey or premature infant loss. You cannot just return to life as you know it.”

Novod said mental health access is incredibly important during and after the NICU experience.

“You need to process and you need to have access to mental health services,” she said. “It is not equitable for only the people who can afford it can go to therapy. People need to get back to their lives. They need to get back to their marriage. They need to get back to their other children. They need to get back to their jobs and volunteer opportunities. People can make a difference in their community, but they can do all these things when they’re whole. They cannot do it when they’re broken, so we can’t just be like, ‘oh, this stuff is going wrong in Louisiana,’ but we’re steady leaving people behind to just figure it out on their own.”

Novod considers Saul’s Light very lucky to have gotten three relevant laws passed in two years.

“It’s unheard of, most people can’t believe it. Sometimes I can’t believe it. I still pinch myself,” she said. “Our policy successes are absolutely attributed to the strength of our community standing and our partnerships.”

Legislation passed includes donor milk laws — 2022 Act 488 and 2022 Act 489 — and a stillbirth tax credit 2021 Act 467.

“We want to make sure that families are given everything that they need to be successful and have the best start in life,” Novod said. “We rely on community partners and organizations to work with us to identify what the needs are and see what are the things we can fight for legislatively. We’re just advocating for policies that really benefit our families and put our families’ experience front and center. We want our babies to have good outcomes. I’m so proud of the work that we’ve been able to do, and it’s made meaningful changes in Louisiana already. And we start to see the families that benefit from policy changes. They say they feel less alone, which is the whole point. We don’t want any families to go through this journey and feel alone.”

In 2019, the city of New Orleans proclaimed September NICU Awareness Month in the city, acknowledging the national observation.

September is a time to raise awareness for the families that have to endure the neonatal intensive care unit and also to celebrate the healthcare professionals who take care of those families.

“It’s just really an opportunity for us to shine a light on the experience and say to people, ‘we see you,’ and that’s really our goal here,” Novod said.

Novod suggests people join the observation month by donating to NICU family advocacy organizations like Saul’s Light. She also said that showing physical support to NICU families you know is an extra special way to observe the month.

“It’s important for people to know that when they’re feeling the most vulnerable, they’re feeling at their lowest, that the people that are coming to take care of them are the people that they know,” she said. “It’s their neighbors, it’s their people at church, it’s their people at the corner store, it’s the auto mechanic. We’re harnessing the power in the generosity and the kindness of the community. I feel like everybody knows somebody, and research shows that the Black community, in particular, is really, really good at philanthropy. It’s something that we do. We give a lot more than any other community and we do it often. So I think that our community should be mindful of that. There are Black-led organizations out there that need your support and we need your support in every which way.”

Saul’s Light accepts donations year-round.