The silent struggle: Examining the impact of infant mortality on families and the community
“His name was Evan Swain Abrams. He was born Aug. 16, 1997, and he was 8 pounds, 8.75 ounces. If he were alive today, he would be 20 years old,” drama teacher Cathy Swain-Abrams said.
UNDERSTANDING INFANT MORTALITY
The loss of a child at any age is one of the most devastating experiences a family can go through, but the death of an infant is particularly heartbreaking. Often, women live silently with this pain, afraid to talk about this taboo topic due to societal perception, though it is something they are not alone in experiencing.
Infant death is a tragedy that affects many in the Columbus community. According to the US Department of Health and Human Services, in 2015, Ohio had the fifth highest infant mortality rate of any state, and the United States has the highest infant mortality of 26 developed countries. This problem is prevalent in Franklin County, which is one of the counties with the highest mortality rate within the state, according to Christine Sander, director of infant wellness at Nationwide Children’s Hospital.
“In Franklin County, the infant mortality rate is just over eight percent, but if you look at the comparison between non-Hispanic black and white children, the difference in the mortality rates of the two populations—the disparity ratio—is also abnormally high. This disparity ratio is at about a three, which means that for every one non-Hispanic white child dying, there are three non-Hispanic black children who die,” Sander said.
In addition to the racial disparity, drug use is a major contributor to the infant mortality rate in Central Ohio.
“Drug use is incredibly common in Central Ohio, especially heroin and opiates and cocaine. Those are things that cause stillbirths and pregnancy complications,” Dr. Heidi Arbona, an OBGYN affiliated with St. Anne’s Hospital, said.
The term infant mortality encompasses a wide range of scenarios but is generally used to define the death of children under the age of 1.
Some of the causes of infant deaths are medical, but many can come from the social climate of the area the mother is in, and often, these factors affect infant mortality rates more than the medical causes.
“Infant mortality is a symptom of the health of a community. There are medical reasons for the deaths, but environmental factors affect the infant mortality rate of an area. We call these the social determinants, and they include stress, environment, poverty and many other things that affect the health of the mother. If you look at Columbus’s homicide rate, unemployment rate, poverty rate and homelessness rate, they are all prevalent in different areas, but Franklin County is where a lot of those hotspots overlap,” Sander said.
Despite all the uncontrollable factors that may impact an infant’s survival, such as genetics, leading a healthy life is the best way to ensure a safe pregnancy.
“The numbers are on your side. If you’re somebody who eats consciously, exercises appropriately, lives in moderation, is disease-free, your chance of procreation is higher,” Arbona said.
EXPERIENCING A MISCARRIAGE
Many assume a miscarriage occurs only when a woman has her period while pregnant, terminating the fetus. However, according to Arbona, miscarriage is a much broader term.
“A patient can come in, and I can do an ultrasound, see the embryo, and they haven’t passed it. They still feel pregnant because they still have the pregnancy hormone circulating in their system, so that is what we would call a missed-abortion. There is no life, but the body has not passed it,” Arbona said.
Business teacher Chrystal Shanahan lost her second child due to a miscarriage early on in her pregnancy and experienced its effect on her life ever since.
“I lost the baby at 12 weeks, so we didn’t get a chance to find out whether it was a boy or a girl. But if the baby was alive today, it would have just turned 5 in August,” Shanahan said.
“We found out in late January 2013 that I was pregnant, but we waited to tell people to make sure everything was moving along like it should. When I reached 12 weeks, we went in for an appointment and were told everything seemed to be going well; the doctor confirmed it, so we started to tell people. We were ecstatic, so we pretty much told everybody we knew.
“About a week later, I started to not feel sick anymore, which was unusual. The other times I’d been pregnant, I had really bad morning sickness, so I was concerned that something was wrong. I called my doctor, and she had me come in for an appointment, and we did a blood test to check my hormone levels. We found out that they were decreasing, which told her that, chemically, I was having a miscarriage. She scheduled me for a procedure to have the remains removed. The worst part was that we’d just told everybody—we started telling people on a Monday, and by that Friday, we had to let people know we’d lost the baby,” Shanahan said.
Olentangy High School English teacher Erin Centa lost her child at the beginning of the third trimester, which meant he was stillborn. A death in the womb before 20 weeks is considered a miscarriage, but between the 20 week mark and delivery, the death is considered a stillbirth.
“His name was Brandon Centa, and he would be 6 years old now,” Centa said. “Six years ago, I was pregnant with my second child—he was a boy, and he was 31 weeks along. One day in May, I went to the doctor; everything seemed to be fine at the appointment, but that night, I couldn’t feel him moving much. I was a little worried, but babies sleep sometimes, so I wasn’t too concerned. The next morning, he still wasn’t moving, so we went to see the doctor, and they couldn’t find a heartbeat. He had a blood clot in his umbilical cord, and he’d passed away because of it. We scheduled a delivery date, and I had to give birth to my dead son.”
The moment Centa found out was incredibly emotional and is one she remembers distinctly.
“It was surreal—I can still picture what happened as the doctor sat down on the bed and told me. I was in complete disbelief because I didn’t even think it could happen. I was alone when I found out because I didn’t think it would be that big of a deal, but instead, I found out I had lost my child,” Centa said. “It’s something I don’t think I’ll ever forget.”
Heart defects are one of the main causes of neonatal death, along with premature birth and low birth weight, according to the March of Dimes. Swain-Abrams lost her first child, Evan, to a heart defect in 1997, and it has changed her outlook on the world.
“In 1997, I was pregnant for the first time, and all throughout it, everything seemed to be very normal. We did everything we were supposed to do; we weren’t aware of any issues. When he was born on Aug. 16, 1997, they didn’t bring him to my room for a little bit. They said he was having a little bit of trouble with breathing and circulation, so they were going to keep him for a little while. He was born on his due date, so I didn’t assume anything would go wrong. I was tired because it was 6:30 a.m., so I didn’t think too much about it.
“As the day kept going on, we began to get more concerned because we weren’t getting any answers. He was born in a small hospital in Western Ohio, and it got to the point where we came to the decision to have him transferred to a bigger hospital. We had him transferred to Columbus Children’s Hospital, where we found out he had a heart defect. We were told he had to have surgeries, and the first one would have to be in only a couple of days.
“He went in for surgery on the morning of Aug. 20, and it was a surgery with an 80 percent success rate, so we expected it would go well. They put him on a machine to help his heart function as they fixed it, and when they tried to take him off of it, even with the fixes they made, his heart couldn’t function on its own. He died the afternoon of Aug. 20, 1997,” Swain-Abrams said.
The grief Swain-Abrams and her husband felt was consuming; the death of their son meant that all their preparations for him would be nothing more than a constant reminder of their loss.
“Instead of planning to bring a child home, we had to plan for a funeral. Our lives, our plans for the future, all of it changed. We’d picked out a name; it meant so much to us and we were so excited about it. And the only time we got to use it was on his gravestone. You think you do all the right things. You work to create the best environment for your child, and then it can all go horribly wrong,” Swain-Abrams said.
GRIEVING AND RECOVERING
The grieving process is different for each person, and so is the way the death of a child affects him or her. For young children, it can take years to understand the impact the death could have on their lives.
“My son was pretty young when it happened—he was 6, but he went to all the appointments; he knew he was going to have another sibling. He was really excited about it, so it was hard to tell him that he wasn’t going to be having a brother or a sister because it’s hard for a child that young to understand death and what it truly meant,” Shanahan said.
Swain-Abrams also experienced some of these complications with her children.
“We’ve always been really open about it with our kids, but they went through different stages of realization as they grew up. It affected my oldest’s sense of identity because it made her wonder if she’d even be here if Evan had survived. They’ve both gone through phases of feeling like they were missing out on something in their lives because they’ve wondered what it would be like to have their brother there,” Swain-Abrams said.
Sometimes, different methods of grieving can cause strife in relationships.
“It was a huge strain on my marriage to lose a child because we were both grieving, but we were grieving in different ways. You’re used to being there and supporting each other, but grieving becomes your primary function. You’re trying to work through everything, and because it’s so hard on both of you, you lose your support system too. There were times that I thought [my husband] wasn’t grieving Evan the way I thought he should be, even though he was doing it in the way that felt best for him,” Swain-Abrams said.
Swain-Abrams’ husband, Robert Abrams, said that the death of his child had a delayed effect on him because his initial focus was on his wife’s pain.
“During the time immediately after Evan’s death, Cathy and I were in different stages of grief at different times. In some ways, that was good, because we could support each other better. But over time the pressures of grief, and of having to move on with our lives, placed a lot of pressure on our marriage. When I developed depression and anxiety about six months after his death, this negatively affected our marriage for some time,” Abrams said. “Because I suppressed my feelings, I developed a more severe depression, and I suffered for several years before I received the treatment I needed.”
Centa often had days where she questioned her ability to continue on and found it difficult to persist.
“I knew that I had a responsibility to my husband and to my other son to keep on going—to continue to get out of bed and put a smile on my face and continue on with my life. I could either let the experience define me or I could pick myself up. I kept going, even when it felt impossible because the mourning was all-consuming, but I had a life to live. I’ve realized that I don’t know why it happened. I’ll never know why, but I made the choice to make the most of what I do have and to honor his memory too,” Centa said.
For those who choose to get pregnant again, the death of a child raises many concerns that didn’t exist before.
“One of the things I was nervous about was getting pregnant again. It was incredibly nerve-wracking; I knew there was nothing I wanted more than to have another baby, but there was that constant fear in the back of my head, and even after my next child was born healthy, there was a worry with the following pregnancy as well. It took a lot of joy out of the pregnancies. I didn’t want to have another child to replace Evan, but going through the experience of pregnancy with such a terrible outcome made me really realize the need I had to hold and take care of a child because I didn’t get the chance to do that with him,” Swain-Abrams said.
To ensure the highest chance of a successful delivery, mothers who are at risk due to the death of a previous child are heavily monitored.
“A few months after Brandon’s death, I found out I was pregnant again, and they closely monitored everything with our third child. She was born healthy about a year after we lost our second. Every day, I think about the ‘what ifs.’ I’m sad, and I miss the promise of that, but I also realize that if he were alive, I wouldn’t have my daughter, so I’m sad and I’m happy at the same time,” Centa said.
Abrams said the healing process, though lengthy, united his family.
“We are a much stronger, much closer married couple now. We have been through the worst nightmare a parent can have, survived it together and are now closer than we’ve even been,” Abrams said.
MAKING A DIFFERENCE
After the loss of a child, many grieving mothers choose to get involved with organizations that help those who are going through similar tragedies.
“After it happened, I started to get involved in different organizations that tried to make changes to help expecting mothers and raise awareness about infant mortality. I started doing work with the March of Dimes, and at one point I even testified at the Statehouse as part of an effort to get legislation passed to get more funding for work with infant mortality. It really became all-consuming; even after I went back to work and continued on with my life, it was all through this filter of the loss of a child,” Swain-Abrams said.
March of Dimes is a nonprofit organization that donates 77 cents of every dollar raised to help expectant mothers, utilizing research and specialized programs. Lori Dreyer, a mother of four, has been directly touched by March of Dimes.
“My first child, Rylie, was born at 32 weeks. I went into the hospital very early because I had Eclampsia and HELLP Syndrome, which are very rare, and I had been having a totally normal pregnancy. I was moved to a different hospital with a high-risk OB. Rylie never had to use oxygen, but she did have to live in the Neonatal Intensive Care Unit (NICU) for about three weeks. I learned that I was able to get steroid shots prior to her birth, which sped up her lung development so that she was able to breathe when she was born. Then they also gave her surfactant for her lungs when she was born,” Dreyer said.
After Rylie, Dreyer’s three younger children relied on support from the March of Dimes and their mother’s high-risk OB, Dr. Kim Brady, to help them survive prematurity. Support was especially critical for her youngest child, Avery, as Dreyer developed Placenta Acredia, which is when the placenta grows outside of the uterus and starts to consume the rest of the woman’s body.
“They used a lot of technologies March of Dimes had developed. So some of those things that they’ve done over the years in research is what has kept my children alive. It was interesting to see in the decade from my oldest to my youngest just how much more they knew,” Dreyer said.
Despite the toll of all the sleepless nights and days spent in the NICU had on Dreyer and her family, they still made it a goal of theirs to give back to the people who helped them through it all.
“The March of Dimes always had volunteers at the NICU. There were often times where we would be at the NICU from early in the morning until late at night, and then go home to sleep and start it all over again. They would bring in food and feed the families that were there. They would come and just listen if you needed to talk to someone or connect you with someone else. That was so helpful for us; we wanted to do something to give back,” Dreyer said.
Since Rylie’s birth in 2006, the Dreyer Family has been working closely with the March of Di
mes. Every April, they organize a family team to raise money and participate in the March for Babies, hosted by March of Dimes. Just this year, the Dreyers were named the 2018 Ambassador Family for the Greater Cincinnati and Northern Kentucky Area.
The community is also essential in making a change to Ohio’s infant mortality rate; this is the level at which many initiatives start. Federal and state governments contribute funding but often little else.
“There is a group from the Franklin County mayor’s office called CelebrateOne, and many groups working with them around the county, centering around things like housing or transportation or neighborhood safety, and they are all working to address these social determinants.
“From the medical perspective, there are three points we work towards at Nationwide Children’s, and we work with Ohio Better Birth Outcomes and other hospitals across Ohio. The first is ensuring mothers get into strong prenatal care. The second area of focus is perinatal quality, and that is the work towards reducing prematurity from a clinical perspective. The third area we work on is reproductive help; our focus is making sure that at-risk populations have access to accurate reproductive health education and are aware of safe spacing between pregnancies as well as having access to effective to birth control. We try and give those in these at-risk communities the best chance possible, so we situate clinics in areas near them and try and employ at-risk mothers because at the end of the day, we want to work to improve their entire quality of life. Together, we hope to reach an infant mortality rate of 6.0 and a disparity ratio of 1.5,” Sander said.
Though they see the positive effects of the changes they push for, those who have lost a child still feel the impact of their loss, even decades later.
“It’s always hard. Evan would be college age now; you’d think it would get easier. But it never stops hurting,” Swain-Abrams said.
SHARING THEIR STORIES
For many families, sharing their story and raising awareness in their communities is an important step in ensuring grieving mothers don’t feel so alone.
“I share my story because people need to know that when you lose a child, it’s not because you did anything wrong. It’s just that something wasn’t right with the baby or your chemical balance. A lot of people seem to blame themselves; they look for mistakes they’ve made because they don’t know how to reconcile with the loss of th
e child. They always think they should have done something differently, but the reality is that sometimes, even when you take all the right steps, it happens. And it’s not your fault—in a situation like that, you can never blame yourself for it, and I want to make sure those affected by this can truly see that,” Shanahan said.
Centa wants mothers to know that others understand their loss and that they aren’t alone, but that there also is hope.
“The people who it happens to—they need to know that it’s going to be okay. It’s probably the worst thing that could happen to somebody, and you’ll never get over it. But eventually, you’ll end up finding a new normal,” Centa said.
Though these families will never be the same after the loss of their child, they have all found ways to move on. For those affected by infant mortality, the struggle may continue, but many will work to help others in the same situation and prevent infant deaths in the future.
Those who have lost a child sometimes struggle in silence, making it easy for outsiders to overlook the pain they encounter daily. Through sharing their stories, these families hope to show people the impact infant death can have on a person’s life and help others who have endured similar tragedies see that they are not alone.