Story by guest writer Caroline Thompson
When tragedy strikes, our consolation prize is often community. Be it the death of a loved one, the diagnosis of a terminal illness, or the news of a terrible accident, most calamities bring together friends and family bearing casseroles and comfort, ready to listen and share in the pain. But there are some tragedies that garner no such support. They're too personal, too private, too vulgar to discuss in polite company. The victims of these tragedies often suffer in self-imposed silence, never knowing the comfort of commiseration.
Karen Kelly felt this isolation after the loss of her first pregnancy. In February 2013, during a routine checkup, Kelly and her husband Sean were informed that their unborn daughter had severe chromosomal issues, issues which made it unlikely she would survive past birth. Kelly was 20 weeks along, and was suddenly faced with a heart-wrenching choice: let the pregnancy come to term knowing her baby girl wouldn't live past delivery, or go through with a termination. With heavy hearts, she and her husband made the decision to terminate the pregnancy.
"We felt very alone," said Kelly. "I didn't have people close to me who'd gone through a loss before, so I had no one to talk to. Everything keeps going on around you when your world has stopped, and yet you're supposed to just pick up and go back to your everyday life as if nothing happened. That is really hard to do, and it's an unfair expectation of people who are in that situation."
Because they didn't have anyone in their social circle who had been through the loss of a pregnancy, the Kellys began to look for local support groups.
"We were living in south Texas at the time and we didn't find anything," said Kelly. "Not even our doctors gave us any information on what to expect or how to cope and heal after the loss. It was a very isolating process."
Kelly's experience is more common than you might think. It's hard to know exactly what percentage of pregnancies typically end in a loss, as many women miscarry before they even know they are pregnant, but the Mayo Clinic estimates the number to be around 20 percent. March of Dimes, an organization dedicated to preventing premature birth, estimates that the percentage may be as high as 50 percent, although they recognize that it sits around 15 percent for women who know they are pregnant.
Miscarriage can happen for a lot of different reasons, most having to do with genetic or hormonal abnormalities beyond the mother's control, but the silence surrounding pregnancy loss can lead women into a cycle of self-blame, which is something that Kate Taylor, a Chicago-based birth doula and music therapist, sees with a lot of her clients. In addition to helping women have a fulfilling and natural birth experience, Taylor runs a therapy group for couples who are suffering with infertility and miscarriage, and she says the lack of support from the medical community after a pregnancy loss can be devastating.
"I'm seeing a lot of trauma related to women who are treated poorly by their physicians [post-miscarriage]," said Taylor. "Physically they're mismanaged, and emotionally they're not properly assessed. Then they're sent on their way and told to go ahead and try again in a couple months.”
The healing process is varied for women, and physicians need to remember that women are grieving the loss of a baby. Taylor is especially concerned with the lack of information given to women who lose a pregnancy, which is something Kelly has experienced firsthand, both after her termination in 2013 and after she suffered a miscarriage last summer.
"I think that the medical field really needs to have more information available for patients," said Kelly. "I've had two pregnancies and two losses now; I lived in Texas when I had the first one and Washington D.C. when I had the second one, so I saw two completely different sets of doctors and hospitals. For both pregnancies, when I first went in for a checkup I was given packets of information about all the important dates and phone numbers and everything I had to do to prepare for the baby. But with both losses I was given no information. I was given no resources. Nothing. Women in these situations need to go home with a reference point."
Kelly's experience after her first loss inspired her to start Through the Heart, an online pregnancy loss support group and educational source for people who don't have access to local resources. In addition to providing a safe space for women and their partners to talk and learn about their shared experiences, Through the Heart also sends out free Comfort Kits, which include candy, pampering items like lotion, a RedBox code, and a handwritten note, to women and couples who have recently been through a loss.
"The idea is to provide a distraction during a difficult time, but we realize it's not going to take away the pain," said Kelly. "It's not going to change what happened, but it's an opportunity to let people know that someone out there is thinking of them, and give them a way to start the process of healing."
Through the Heart is also partnering with doctors and hospitals across the country to provide informational pamphlets to women after a loss.
For so many women, the process of healing after the loss of a pregnancy is shrouded in guilt and loneliness. Because miscarriage--and infertility in general--are such taboo topics, it can be hard for women who've been through them to know how to process their feelings and move on. Opening up and sharing these feelings can help ease the pain, but only if those around them know how to respond without causing even more emotional harm.
"People like to say different things after a loss," said Kelly. "I know they all mean well, but a lot of times they're just not helpful."
"I heard 'Well you can try again,' a few times, which didn't help because another child wouldn't replace the one I'd lost, and some people never get pregnant again. There was also a lot of 'It was in God's hands,' or 'It was meant to be,' which are equally hurtful because they don't really mean anything, they're just empty things people say to fill the space, and they don't help when you're grieving the loss of a child."
Although Kelly was hurt by those who said the wrong thing after her loss, she was even more wounded by the silence of people she considered close friends.
"To me, the most hurtful thing anyone could say was nothing. I was going through a very difficult experience, so to have friends dismiss that or be too afraid to talk to me about it was awful. If someone loses a parent, are you going to ignore that? The same thing applies here. You've gone through a significant loss and you want that to be acknowledged."
While the silence Kelly felt was likely a result of well-meaning friends who were afraid of saying the wrong thing, women's health in general is an issue that gets swept under the rug because people are uncomfortable discussing it. When a pregnancy is lost, society is often quick to blame the mother for her perceived role in the incident. Did she drink? Was she eating healthy? Getting enough exercise? Couple these biases with the fact that most people don't realize how common pregnancy loss is, and you have the perfect recipe for the shame and secrecy that clouds the lives of so many women after a loss.
While running Through the Heart, Kelly has found the most comforting thing to say to someone who has just experienced the loss of a pregnancy is simply "I'm sorry, I'm thinking of you." She says it sounds simple, but that it's a universal gesture, and it really helps knowing others can see and understand your pain.
Taylor says the women in her group heal best when given the ability to share their personal stories in a safe place.
"When women hear others speak up about their experiences, they start to realize that it's possible to heal through the process of storytelling," said Taylor. "I want to give women the ability to find empowerment in their own stories; give them the ability to hold those stories, to reshape them and to heal through sharing. Letting them tell their stories is very important."