Our Interview with Nneka Hall, Pregnancy and Infant Loss Awareness Advocate
"“[Advocacy] means doing whatever is needed in the moment for the community that you are representing or serving or a part of. […] As a PAIL advocate, this is a person who is knowledgeable about all things pregnancy and infant loss, knowledgeable about books, knowledgeable about different resources, and knowledgeable about what not to say in the moment.”
We recently sat down with Nneka Hall, a full spectrum doula and Pregnancy and Infant Loss (PAIL) Awareness Advocate with a primary focus on infant and maternal mortality within the African American Community. Nneka is the mother of four, two Sunshines, an Angel baby and a Rainbow. Following the stillbirth of her daughter in 2010, Nneka has spearheaded several significant initiatives to support families experiencing PAIL, to aid families in achieving positive birth outcomes, to train members of the community to provide PAIL support and more. Read Nneka’s bio here.
We spoke with Nneka about how personal journey and lived experience has informed her advocacy work, some of the initiatives she has led to provide support to families experiencing loss, the role of the community in supporting families experiencing loss, and more. Read our full interview below.
Can you share your personal journey as to what led you to become an advocate for individuals experiencing pregnancy and infant loss?
My third pregnancy ended in a 39-week stillbirth. That catapulted my work into doula work, which turned into maternal health work, which turned into public health work.
My daughter was healthy. She was born on August 27, 2010, which was my 37th birthday. It was a bittersweet time. I never expected to hear, “I’m sorry, there is no heartbeat.” I did notice issues, and I did report them. But they said, since I was separated from my then-husband, that it was all in my head. A lot of gaslighting going on there. I remember being referred to psychiatry.
I remember being referred to different providers, and at the end of the day, she asphyxiated in utero due to me having preeclampsia that was missed. So, there was something wrong, but not with her. She was perfectly healthy, in every way, except for one, the fact that she was deceased at birth. She actually died while we were waiting to be seen by my OB at my 39-week checkup.
But that’s not actually what catapulted me into this work. What was the catalyst was learning the statistics surrounding Black infant and Black maternal mortality in the U.S. and wondering why we were talking about nail polish and most recent sales and recipes at family dinners, when we needed to discuss more of maternal health and overall women’s health issues.
How has your lived experience shaped your approach to advocacy and the work you do in the field?
Well, it has made me be very, very, very verbal about this. It’s an issue that is near and dear to my heart. I always say if Annaya, my daughter, could have been the last baby that was stillborn due to medical negligence, by all means, take her, because I look at the amount of pregnancies that have been saved because of my work. The amount of awareness that has been raised because of my work. I realized that had she lived, I would not be doing this.
I’m a mom of four – three who are with me and the one who rests in paradise – and I look at the two children I have who were born before her, how losing her shaped their lives. My oldest is 24, and he is an EMT, an EMS trainer. He actually is an EMS trainer at [Boston University], part-time. He is doing this work because of what he has witnessed in the work that I do. My oldest daughter is 19, and she is at [Boston College]. She is a sophomore there, and she’s a wellness coach at a local [grades] 7 to 12 school. She wouldn’t be doing that work but for the work that I do. I look at the lives that have been touched and that have shaped everything that I’m doing now, and everything that I will do in the future.
What initiatives are you involved with that raise awareness and provide support to families dealing with loss?
I actually created a course after taking five other bereavement courses. I teach pregnancy and infant loss to anyone who wants to learn anything, mainly to doulas, mainly to mental health clinicians. My course was built after those classes, from the questions that I still had after [taking them]. It’s a 16-module course, so I had a lot of questions that needed to be answered clearly.
I’ve spoken on many different platforms. I’ve spoken at a pregnancy and infant loss advocacy day for L’Oreal. I’ve spoken storytelling through This Is My Brave. I was selected [by Congresswoman Ayanna Pressley] in 2020 for my work in this field to go to the State of the Union. I was selected in 2016 as a Nominated Change Maker at the very first US of Women’s Summit, hosted by former First Lady Michelle Obama and Oprah Winfrey. I’ve co-produced the Mother Wit Conference. You can Google and see all the places I’ve been in the news. I’ve written op-eds. I’ve been spoken about in op-eds. I sat on the Racial Inequities in Maternal Health Commission [in Massachusetts]. Before the Commission, I sat on the coalition that spearheaded the entire process that became the Commission. I even wrote a page within the report that was given out. I sat on the Ellen Story Postpartum Depression Commission for a few years. It would have been five years, but I stepped down this year because it was time. I’ve spoken at Harvard twice about maternal mortality and morbidity.
Ironically, I did all of this without a bachelor’s degree. With my oldest daughter graduating last year from high school – my son, he went on and he got his degree in biology and it didn’t phase him that I didn’t have a degree – but I knew Simone, my daughter, would say to me that she was smarter than I was (which she is, but I would never admit that). I never wanted her to look down on me, so I went back to school, and I completed a four-year degree in less than two years. I’ll be graduating, and I may walk next month, but I will be reupping and getting my [Master of Public Health] or my [Master of Public Administration]. I can’t decide between the two, and I’ll probably end up doing both on the master’s level and then re-upping for my PhD, and I haven’t decided what I’m getting a PhD in.
But, with that said, those are a few things that I’ve done. I’ve written legislation, I’ve spearheaded legislation. I’ve read a lot of legislation for legislators before they even introduce them. I’ve been on several news shows, etc. So, I’ve done a lot on the advocacy side, raising awareness about pregnancy and infant loss, but I think the most rewarding part is that I’ve just completed my manual, which is 200 pages, because that was for the intro class. I’m adding another 300 pages after my advanced PAIL (Pregnancy and Infant Loss) class launches next month. I’m excited about it.
I guess I’m on the right path, because people try to steal my work, so just knowing that I have touched so many lives – actually, that Annaya has touched so many lives – I realize that she would be a 14-year-old girl right now, if she were here. She’d probably be like her older sister was. I have a 10-year-old daughter as well. But she would just be harassing me for whatever the latest fashion is, and I’m proud to say that as a spirit baby, she has done far more than the average 14-year-old, so I’m very proud.
What is the role of the community in supporting healing for birthing people who have experienced loss?
Well, we first have to realize that we have to stop with the silence. The silence has to be broken. We can’t tell people, “Stop using ‘at least’ statements.” Understand that our children were wanted, and to tell us, “Well, at least you know you can get pregnant,” or, “You can try again,” when you don’t know whether the people can try again.
Be more supportive. If a person loses their partner, or their parent, you have people showing up with horrible casseroles and sending cards and notes. When you suffer the loss of a pregnancy or an infant, yes, people show up that day, but then you’re expected to just move forward and live without talking about that person. My grandmother lived for 93 years, and I can talk about her every day, but when I say the name Annaya, people think that I’m having some sort of mental break or wonder why I’m speaking about her. Just because others can forget that she was here, that does not mean that I should, or that I’m willing to. So, we have to acknowledge and talk about these experiences to normalize these experiences.
I know so many people suffer different types of losses. Anyone that I know who has tried to conceive, or even find out suddenly that they’re expecting, from the moment you see the positive pregnancy test, you have two thoughts: the life of your male child has completely been planned from birth, through marriage, college and all of the other steps in between. The life of your female child has been fully planned, including ballet, gym, tumbling, gymnastics, through the beautiful purchasing or sewing of the wedding gown. And to have all of those experiences just, in one fell swoop, go down the drain, is not easy.
You can’t just expect people to just forget about the plans that they had for that child, especially if the child is stillborn, or at any instance, from the moment of announcing. I’ve known people who announced on Wednesday, and by Thursday, they had suffered a loss. I’ve known people who had baby showers. My baby shower was the Monday before my loss, at work. My work baby shower – I didn’t want a baby shower period, but they surprised me. This was baby number three – it’s unheard of to have more than one baby shower. Or at least, it was, growing up for me. So, people need to normalize talking about these losses, because you never know who else needs that conversation.
How do you address misconceptions about pregnancy and infant loss?
My former mother-in-law asked me, and I’m just going to say this, because it was a myth or something, “Did you sleep on your stomach; is that why she died?” One of the things we have to stop doing is laying blame, because when it happens, we blame ourselves, until we stop, until someone says to us, “Did anybody tell you this didn’t happen because of anything that you did? Something horrible just happened. You didn’t do anything wrong.” Even if the parents contributed to the fetal demise, that does not mean that anyone should go around pointing and blaming. We have to have these open and honest conversations on a regular basis to normalize pregnancy and infant loss.
One of the things that I’ve learned during that week between having my daughter and her memorial service, shocking moment – my grandmother, the way that I grew up, first it was my mother, then there was my uncle, and then there was my aunt. So, we’re walking down the stairs in my house, and she pivots at the bottom of the stairs and she says, “You have to stop acting like that. I didn’t act like that when I lost my son.” And my aunt, who is the baby, was walking down the hallway, and she said, “Mother, what are you talking about?” And we learned about an uncle, her firstborn, who died from crib death, which is what we now refer to as SIDS. We have to have these conversations because after that, I didn’t continue my trek down the stairs. I went back upstairs and dove under my grandmother’s bed, grabbed the family photo album and sat down with her photo album. I went downstairs to where she was seated in the living room and demanded to know, “Okay, who is this baby, and where are they in this book as an adult?” And what I found out was that a lot of the babies in there did not reach adulthood. They died in infancy.
This was something that I found in talking to other people and facilitating these types of conversations. We need to normalize [these conversations], because the world is so much bigger than our bodies. And, we’re walking around carrying so many burdens that are unnecessary. We need to unburden ourselves, so that this generational trauma – so that we can wipe the slate clean for our future generations.
What resources do you wish were more available for people experiencing PAIL?
Wow. I wish everyone was trained. I wish everyone knew what not to say. I wish resources, funeral resources – it costs a lot to bury a baby. You’d think it would be half the cost of an adult, but it’s not. Those funerals can cost the same as adult funerals, depending on materials. So they need a funeral planner. They need someone who is trained, who can help guide them through this process. I wish all hospitals had Cuddle Cots, or Smart Cradles, or Caring Cradles, the cooling units, so that the decomposition of the babies would not be as rapid. I wish they had doulas in every unit to work with this demographic.
I wish there was more sensitivity surrounding losses. I know it was fourteen years ago for me, but when I lost my daughter I was at a teaching hospital, and I’ve worked with people throughout the years who told me that it hasn’t changed that much. I pushed my daughter out, I had my eyes closed, I was in my zone and then I heard crying. So, naturally my eyes pop open, thinking, “Oh my God, they made a mistake,” not recognizing that it was an adult crying. And when I opened my eyes there was a room full of doctors who had never witnessed a stillbirth before. And I was horrified. That is not the time for people to learn, to witness without permission. Then, when I said something I was reminded that it was a teaching hospital. Those are not the time for people – I mean, and common sense is not common at all. Because to hear… “Well, you know. You know how small those rooms are in the first place and to have it packed with other doctors and then to have one cry out, “Oh my God, she’s so beautiful.” I’m like “Really? What were you expecting?” Now, years later, having done the work, I realize that you never know how long a baby has been deceased in utero. And that was what they were expecting. They were expecting, not a baby that looked like a sleeping baby, such as my daughter, but a baby with a maceration process, the breaking, the decomposition process had started. But you need people there to prepare families for that.
About a half hour after I had Annaya, a nurse came up to me and asked me when I was leaving. I hadn’t spent any time with my daughter, and I was already being asked to leave. They need providers, unit social workers, who are trained to work with these families and to understand that you can't just hand someone a list of mortuaries and expect them to know what to do with them especially when their mind is not right. There’s no way your mind can be right during a time like that. There needs to be an intermediary, someone who is knowledgeable to step in.
Additional resources would be financial resources, because families break apart. You should not have to leave the hospital after a loss and go home and cook a dinner for your family. So, they should be able to give you a gift card or someone should be able to coordinate a meal train for that family. What if…I know a lot of people walk away from their deceased children and leave them at the hospital because they don’t have the money for the funeral. There should be other options and there should be knowledge of those options, because who wants to leave their babies? And you should not be made to feel strange. You should have a resource list that is loss-specific given to you. I had to Google, but once again, 14 years ago is not today. I’ve done a lot of work to help people become aware of pregnancy and infant loss. Everyone’s referring to it as PAIL because I’ve normalized PAIL. PAIL is everywhere now, and that's one of the things that I helped to start – people talking, using that acronym.
What does advocacy mean to you?
It means doing whatever is needed in the moment for the community that you are representing or serving or a part of. It shifts. The meaning changes based on the group that I’m with at the time. As a PAIL advocate, this is a person who is knowledgeable about all things pregnancy and infant loss, knowledgeable about books, knowledgeable about different resources, and knowledgeable about what not to say in the moment. Knowledge about articles, and if you haven’t seen the ProPublica series on stillbirth, that’s a beautiful read and you might find me there in some spaces as well.
Knowledgeable about preventive measures, because none of us who have been here want others to experience what got us here or what brought us here, or types because I know people who have suffered so many losses. So as an advocate, I’m always thinking about ways of improving the community that I serve and I’m a member of. As an advocate, I am also looking for ways to keep people from being a member of this community. I always have to talk about Count the Kicks. It’s free here in Massachusetts, and it is a proven preventive measure for stillbirth. So every birth worker, anyone who knows a pregnant person, and anyone who comes in contact with a pregnant person, needs to be aware of this beautiful resource that is free in Massachusetts.
If someone wanted to commemorate Pregnancy and Infant Loss Awareness Month, or get more involved generally in advocacy and support for individuals experiencing PAIL, what would you recommend they do?
Well, become familiar with the resources. Know what’s in your demographic. For example, we have, it used to be called Mass SIDS. The Massachusetts Center for Unexpected Infant and Child Death used to be called Mass SIDS. Become familiar with their work, they’re a great organization. There’s an organization, Propa City, who does things in honor of pregnancy and infant loss awareness month. There is the Empty Arms group, I think they’re on the South Shore. There are tons of pregnancy and infant loss awareness events going on throughout Massachusetts.
At the end of the month, you can always sponsor a Molly Bear. If you know someone who has suffered a loss, definitely sponsor a Molly Bear. My Molly Bear is our space holder, so she’s in all of our family photos. We dress her just like us during the holidays, et cetera. Just so that people will understand that Annaya’s space, she’s always here.
This month something simple can be so memorable. The other day I did a talk, and the host threw me and it was a crazy reason why I was thrown. She simply said my daughter's name. We’re always saying our children’s names but we rarely hear others say it, so this month, say their names. Find a moment to include the names of someone that you might know who suffered a loss, their child’s name. Know that not everyone who has suffered a loss is open about it, but there are always signs. Give them the space, go sit with someone, that’s another thing that can be done this month. Light a candle on October 15, Pregnancy and Infant Loss Awareness Day.
The end of the month is Black Infant Loss Awareness Week. Honor babies the entire month, and if you don’t know anyone, honor living babies, you know, somehow, just find one and honor it in some way because we all would love to have our children here. I wonder who she’d be all the time, especially when I look at my girls, older and younger. My older three, they are five years apart each. When Annaya was born, Jelani had just turned ten. Simone had just turned five, and then four years later, I broke the five-year gap. Four years later, I had my rainbow baby. So, just find ways of honoring families this month.
The Zakim Bridge was lit up for October 15. Proclamations were read throughout the Commonwealth in honor of Pregnancy and Infant Loss Awareness. Plant something. I have a rock garden and every year we add names to the babies that were stillborn or passed away between last October and this October. And I use those kinds of rocks that light up, the sun-infused ones. So, there are always ways, and I know people frown on butterfly releases, and in the Commonwealth, it is not legal because it’s considered wildlife, but there are other things. You can blow bubbles in honor of babies. They frown on balloon releases also, because of animals and birds getting tangled, but you can blow bubbles. My youngest used to draw pictures up and down the sidewalk on my street in honor of Pregnancy and Infant Loss Awareness Month. There’s so many ways to honor and so many ways that I have honored.
I know there’s a duck run this month where you purchase a rubber duck. It’s a fundraiser for Pregnancy and Infant Loss Awareness month and you purchase a duck, and they write your child’s name on the duck, and it goes into a river and you get to watch the ducks go down that river. It’s really cute. There’s a boat thing, I know, that is always done every Pregnancy and Infant Loss Awareness month. So, there are events happening all over the world in honor of these beautiful, deceased babies. So, just let your fingers do the walking, as we used to say in the eighties, and Google and find something near you.
Is there anything else you would like to share?
Just be good to each other. You never know if it's going to happen. I know last week, I got a phone call from one of my cousins. I hadn’t you know, between last October and this October I’ve served families, I’ve connected resources, I’ve supported birth workers through supporting their clients and my cousin reached out and she said, “You know what today is?” And I’m just sitting there, and I’m like, I have no idea. I couldn’t remember. There’s always a date, there’s always somebody’s angel-versary. It’s always somebody’s birthday. I didn’t really think, and she said, “Well, today would have been Kensley’s first birthday.” And Kensley was stillborn a year ago at 30 weeks, and her mom is now 30 weeks, well 31 weeks soon, but 30 weeks pregnant with her rainbow baby. She said to me “I didn’t know how to tell you that I’m pregnant, because you told me to wait six months to a year, but we waited 5 months. Is that okay?” I’m like, this is your life.
I said all that to say this: Life is beautiful, and it can be. Regardless of the outcome, babies are being born, whether they’re born alive and they live till the ripe old age of whatever, or whether their time here is brief, they deserve to be honored and treated as babies. And I found that in this work, people do not treat babies the same way they treat anyone who has been here for a while, and I don’t understand it, and I never will. So, definitely, whatever you say, there is no wrong way to honor. Just do it.
I know last year ProPublica did their memorial wall, which is beautiful. If you have the chance to go to their website and look at the memorial, it's subtle, very subtle, but it’s beautiful. And there are many tributes online. We didn’t have access to this stuff in the eighties, or even most of the nineties, but you can find everything now. Follow the organization Mattie’s Memory. The things that Hazel will do this month will be completely mind-blowing and exhausting.
This year, I decided to support other people versus standing out. I’m tired, like I said, I did a four-year degree in less than two years, so I’m trying to get my mind back to the point so I can do my masters in a similar amount of time and then spend the bulk of my time on my PhD. Just tell people to be good to each other. You never know. People who were not there for me when I lost my daughter, I found that I had to support them through the loss of pregnancies, and they didn’t get it until it happened to them. And no one is immune to this. That's something that people need to understand: no one is immune.