Courtesy of Rebecca Esquivel Makris

Why Talking About Stillbirth Is So Necessary In 2017

Before the summer of 2015, I understood that stillbirth — or the death about a baby during pregnancy after 20 weeks gestation — was something that happened. However, based on the number of times I’d ever heard anyone so much as use the word stillbirth, I figured it happened so rarely that a person needn’t really think about it. But then my first friend had a stillborn baby in 2013. I went and sat in the hospital with her. I didn't know what you need to know about stillbirth because, honestly, I thought, Thank goodness this almost never happens. I doubted I'd ever have to comfort a friend through such a loss again.

I was wrong.

According to the Centers for Disease Control and Prevention (CDC), approximately 1 percent of pregnancies end in stillbirth. In the United States, there are 24,000 stillborn babies born each year. The CDC states that this “is about the same number of babies that die during the first year of life" and it is more than 10 times as many deaths as occur from Sudden Infant Death Syndrome (SIDS).

Since virtually every new mother in the United States is careful about positioning her baby in sleep due to the risk of SIDS, I feel like that figure bears repeating: More than 10 times as many babies die in the womb between the gestational age of 20 weeks and birth than die from SIDS. And, yet, stillbirth is a loss so often shrouded in silence, existing in some space in between. It's a loss often left with very little space to grieve. And, while the experience of stillbirth is rare, it is not so rare that we can, or should, avoid talking about the risks openly and compassionately. It is not so rare that we should allow families who experience this loss to suffer silently. We can do better to support them, as friends, family, and as medical professionals.

Courtesy of Margaret Pritchard Houston

In the summer of 2015, within a matter of weeks of each other, two more of my friends experienced the stillborn losses of their sons. The first was a friend from high school, Margaret. Margaret’s son Isaac was delivered stillborn at 27 weeks. I watched as Margaret, a writer, who was also open about her experiences with infertility and multiple rounds of in vitro fertilization (IVF), beautifully articulated her experience of grief over the loss of her son. She spoke about how important it was for her to know that others recognized that, as she put it, “Isaac was here,” that he has a name, that he is her son, and that he is loved. Her openness about her feelings and experiences created a beautiful space, which allowed so many of us to better support Margaret as she honored Isaac’s life.

Several weeks later, I received a text from my friend Becca, saying that she was headed to the hospital with some early contractions during her third pregnancy. Becca and I had met when we were trying to conceive our first children, our daughters were born only hours apart. That afternoon I received another text from her saying that the baby had died, just shy of 29 weeks gestation. Becca also used social media to share the loss of her son Tucker openly, honestly, and with a spirit of positivity. In addition to talking openly about her loss, she very quickly began organizing awareness of stillbirth and fundraising for a piece of medical equipment called a CuddleCot, which allows families to extend the amount of time they can spend with their baby.

Courtesy of Rebecca Esquivel Makris

With the news of their stillborn sons, I was shocked and filled with sadness for my friends. As I watched these two women work through these devastating losses in very brave, public, and emotionally honest ways, I found myself constantly thinking about the women who experience the loss of stillbirth but who do not feel the kinds of support Becca and Margaret did and continue to. Stillbirth is still a topic that can be taboo to talk about. The silence around these losses can contribute to feelings of isolation and perpetuate the lack of proper social and medical support for families.

In an effort to better understand stillbirth, I spoke with a number of women who've experienced stillbirth, parent advocates, and a representative from a company trying to change the way in which families interact with their stillborn infants.

I learned more than I could have imagined.

Rebecca Esquivel Makris And Tucker

Courtesy of Rebecca Esquivel Makris

When she began experiencing abdominal pain and contractions during her 28 week of pregnancy, Rebecca "Becca" Esquivel Makris explains, while she had heard of stillbirth before, it wasn’t on the list of problems she thought could be going wrong as she headed to the hospital. She tells Romper, “Death hadn’t even entered my mind… I was in a happy, safe, naïve bubble.”

When she arrived at the hospital, doctors checked on her son and he appeared to be doing well. The medical team believed that Makris had a severe urinary tract infection (UTI). While waiting in the hospital for confirmation of the UTI her pain become very severe, the medical team had a difficult time monitoring the baby because Makris was shaking so badly. After a time the pain passed and Makris fell asleep briefly and woke up to find that the test results showed no UTI. When they put the baby up on the ultrasound again, the doctor told Makris, "The baby is gone."

Makris would come to understand later that her placenta had detached from the uterine wall, an event called a placental abruption. This had deprived Tucker of blood flow and oxygen. It was also the source of her extreme pain.

After he was born, Makris kept her son Tucker with her for as long as possible — the entire 15 hours she remained in the hospital. That experience of bonding with Tucker was so important to her, and she worried that other parents might not have the same chance. So soon after Tucker’s birth she decided that she would fundraise, with the organization Stories of Babies Born Still (SOBBS), to provide a CuddleCot for the hospital where Tucker was born. CuddleCot, produced by the company Roftek, tries to address the emotional needs of a family to spend time with their baby. A CuddleCot looks like a Moses basket, but is a cooling medical device that helps to extend the amount of time babies can stay in the room with their parents rather than traveling back and forth to the morgue. By cooling the baby’s body, the CuddleCot prolongs the amount of time families can spend with their babies. According to Roftek CEO, Steve Huggins, the CuddleCot “has changed the experience for many families as they are no longer having to say a hurried goodbye to their baby."

After Houston was settled into a room in the labor ward, they brought Isaac to her so that she could see him. She explains that she could not handle spending much time with him, “It was so wonderful to hold him and see him, and then the horror of what had happened was overwhelming and I couldn't face it, so we had them take him away.”
Courtesy of Rebecca Esquivel Makris

Within the first month of her fundraising, Makris realized she would be able to fund more than one CuddleCot. It is now a year and a half after Tucker’s birth, and Makris is on her way to fundraising a fifth CuddleCot for placement in California hospitals. She writes letters to mothers who will use the CuddleCots she’s helped place. Her advice to mothers experiencing stillbirth? “Find your light. [Find your] love for the baby you've lost and find ways to bring them to life in your world.”

Many of the mothers interviewed for this story found ways to do exactly that, but the path there was not an easy one.

Margaret Pritchard Houston And Isaac

Courtesy of Margaret Pritchard Houston

Margaret Pritchard Houston’s son Isaac was born at 27 weeks, 4 days gestation via emergency caesarian section after an eight-day hospital stay for observation due to premature rupture of membranes. While the caesarian section was an emergency, in all of the monitoring up to the beginning of the procedure showed no signs that the baby was in distress. Houston recalls, “I was told that I might not hear him cry, since he was very premature. I was told I couldn't see or hold him as soon as he was born — he had to go straight to the resuscitation area [a heated bed with NICU equipment] to be intubated and stabilized.”

Soon after Isaac was born, it became clear that something more was wrong. Around 15 minutes after Isaac’s birth, the lead doctor came and leaned over Houston and said, “I’m so sorry.” From there, Houston explains things were a blur.

Later, after Houston was settled into a room in the labor ward, they brought Isaac to her so that she could see him. She explains that she could not handle spending much time with him, “It was so wonderful to hold him and see him, and then the horror of what had happened was overwhelming and I couldn't face it, so we had them take him away.” They were given footprints and handprints and a memory box from SANDS, the UK’s stillbirth charity.

Courtesy of Margaret Pritchard Houston

The cause of Isaac’s death was later determined to be a Group B Strep infection that had infected the membranes and Isaac, but had not crossed the placenta into Houston’s blood. She says, “So while I was in hospital, 20 feet from the best NICU in the country, my baby was getting sicker and sicker and nobody knew.” Houston says that, 18 months later, she has a good life, but it hasn’t been easy getting there. She's done so through grief counseling and advocating for better Group B Strep awareness and testing. She says, “I will always wonder, though, who he would have been. I will always miss him. I will always love him. I'm his mother — that's my job.”

“The moment I saw her… I wished I had asked to see her sooner.”

Jessica Adams And Ruby

Courtesy of Jessica Adams

Jessica Adams was expecting her first child, a girl, in 2013. She and her husband planned for a midwife-assisted home birth. Her pregnancy had progressed normally until her 41 week. The midwife was observing Adams and the baby over three days of labor. On the third night, she noticed the baby’s heart rate was dipping, but said it was normal during labor. Soon after the midwife left for the night, Adam’s water broke and she noticed there was meconium in it. She called her midwife, who came over, listened to the baby’s heart rate and said that they needed to go to the hospital.

Adams explains to Romper that while sitting in the hospital room while the doctor and the nurse listened for a heartbeat, “I knew right away she was gone. I could tell by the look on all of their faces that she was gone.” She and her husband were told that there was not heartbeat. They were then left alone in the room with this news. Adams, in shock, fixated on what was to come next: How was she supposed to have this baby? She says that, after three days of labor and no end in site, she “begged for them to just take her out.” But they wouldn't.

Courtesy of Jessica Adams

A day later Adams gave birth to her daughter, Ruby. Adams explains to Romper, “I was so terrified to see my dead baby, I couldn't look at her.” Adams waited another day and then asked to see her daughter before she was discharged from the hospital. She tells me in our interview, “She was heavy, almost 9 lbs. Feeling the weight of her little body in my arms felt so good. It felt like home. She was so beautiful... I fell in love and had my heart broken all at the same time.” She continues, “The moment I saw her… I wished I had asked to see her sooner.”

Angel Ousley Naseman And Caleb

Courtesy of Angel Ousley Naseman

Angel Ousley Naseman’s pregnancy with her fourth child, Caleb, was somewhat challenging from the beginning. She experienced spotting at 11 weeks, heavy bleeding at 12 weeks, a surface vein thrombosis at 34 weeks and poor fetal growth at ultrasounds at 19, 22, 26, and 38 weeks. But Naseman says the baby consistently moved well and scored well on more in depth testing.

Planning a midwife-assisted home birth, Naseman and her family calmly reacted when her water broke at 39 weeks during her nightly foot rub ritual with her husband. She began labor slowly, with her family around her. However, hours into the process Naseman experienced some extreme pain and extra bleeding. After transferring to the hospital, the doctors confirmed what they already suspected: Naseman’s baby had died.

In an interview with Romper she explains, “I had never even heard the term stillbirth when this happened to me, which was completely shocking when I realized just how frequently stillbirths occur.”

Caleb was born soon after. Although Naseman was experiencing medical complications post-delivery, she was able to hold Caleb. She explains, “They wrapped our sweet little boy up and handed him to us.” The hospital explained that there was a photographer from Now I Lay Me Down to Sleep — a service that provides photographers to bereaved families for remembrance photos — photographing another child, and asked if they wanted her to come in. She said that her husband wasn’t certain at first, but Naseman wanted to have the photos. Naseman says the photographer “was overwhelmed by the raw emotion of photographing yet another baby [who] didn’t make it, but her presence was a true blessing to us, to inspire us to take more photos.” The hospital wrapped Caleb in an AngelHUGS blanket from an organizations that distributes handmade blankets to families in mourning at the hospital.

Courtesy of Angel Ousley Naseman

Naseman was clear, however, that her experience of loss in the hospital was lacking in what she believes to be basic support. She explains, “The hospital provided no one to help us cope emotionally and nothing on what we should do to explain the situation to our kids. We were given a single page handout before discharge on grief, but that was it.” While she was able to spend time with Caleb, she explains that she wished she’d given him a bath. She says, “I didn't even know it was an option. The hospital didn't communicate how long we could keep him or if we could do those kind of things.”

What Can You Do To Help Support A Family In Grief

In talking with the mothers who contributed stories to this article, I found, over and over again, that while they ranged from being very public and vocal about their losses, to experiencing them more privately, they were eager to talk about their children. It struck me how much the stories of their children were a part of their healing process, despite the fact that there is so much silence surrounding stillbirth. As Angel was careful to explain, “To deny my birth story would be to deny the perfection of 39 weeks of hard work and preparation. We were an amazing team, even through the birth. I didn’t get to hold a screaming life-filled baby at the end, but our birth story helped ease even that pain for me.”

At the same time, Angel explains that her family did not receive the kind of support she wants to see all families facing stillbirth to receive, so she feels it is important also to be outspoken about the ways in which her experience could have been better.

Courtesy of Jessica Adams

As more and more stories are told about stillbirth, hopefully we will see the discussions of stillbirth become more a part of the medical experience of expectant mothers — who can be better prepared to pay attention to their baby’s movements and other signs of fetal distress — as well as in the training of medical staff and improving standards of equipment, such as CuddleCots and resources, like bereavement photographers, available to mothers experiencing stillbirth.

As Houston explains to Romper about her son Issac, “grief is not as strong as love, and most of the time, what I feel towards him is a mixture of love and gratitude that he was here at all… But there are times when the magnitude of what I've lost... is overwhelming.” Later, when I thanked her for the interview, Houston responded by telling me, “It’s genuinely my pleasure. I can do something as [Isaac’s] mom. I don’t get to do that often enough.” It seems that as friends and families of those who have lost babies to stillbirth, one of the kindest things we can do is to give our loved ones the opportunity to tell their child’s story.