A Club No One Wants To Join: Marking Pregnancy And Infant Loss Awareness Month

Oct. 15 is Pregnancy and Infant Loss Remembrance Day. I originally wrote a note on social media in 2009 sharing my thoughts after having suffered multiple miscarriages. Fifteen years later, much of what I felt then is what I feel today. For anyone who has suffered the loss of a pregnancy, please know you are not alone.

— Karen Wall

Over my lifetime, I have belonged to many clubs. High school clubs, Girl Scouts, PTA, the local soccer club and an animal rescue. They were clubs I willingly joined. I paid dues. I donned a whistle. I cuddled kittens that needed homes.

Then there's the club that chose me. It's not one I wanted to belong to. In fact, I never gave it much thought before I joined. But it is without question one of the most influential clubs in my life.

Twenty-two years after I joined, I still wish I didn't belong.

It was a pleasant September day in 2002 when I was recruited. We were a year removed from the terrorist attacks of 9-11, and while the mood of the nation was somber, I was distracted by the happy feelings I had of a new life growing within that I knew would complete our family perfectly.

Then the unthinkable happened. I began spotting blood. The life inside me was in trouble. We went to the hospital. There was the baby, 8 weeks gestation, waving, its heart beating strong and sure. I felt relief. I went home with instructions to rest. I laid in bed and tried not to worry but the bleeding worsened. Panic set in.

Back to the hospital. Another ultrasound. The stoic look on the technician's face and the monitor whose screen I could not see said it all: That life was no more.

The doctor's words echoed in my head. "The fetus is no longer viable."

I went back to work a few days later, to keep myself too busy to think about the emptiness in my heart. This happens sometimes, the doctors told me. Give it a few months and then you can try again. My family and friends -- everyone knew I was expecting again, because I'd had no reason to expect anything but good -- offered their condolences, and l moved on. Losing a baby was painful, but I was over 35. The risks were greater. I knew that. I had a beautiful child who loved and needed me, so surely this wasn't the end of the road.

Fall turned to winter, and as we cruised toward spring I got pregnant again. It was different this time. I was less sure, less calm. We told our parents, but no one else. I took extra precautions to get more rest. Easter morning dawned. I was at peace. 8 weeks and I felt good. It was good to be pregnant on a day synonymous with rebirth and happiness. I basked in the warmth of a family morning, our daughter on the bed digging through her Easter basket, my husband watching her, half-awake.

A trip to the bathroom shattered that idyllic moment. Tears streamed down my face as I mouthed the words to my husband: “I’m bleeding.”

An hour later I was in the emergency room. Why was this happening again? I was trying to be stoic so as not to scare our daughter, who didn't understand why Mommy was going to the hospital. She went to my brother's house to have Easter with her cousins. My father and bonus mom came to the hospital. So did my in-laws. We made small talk. No one knew what to say to me. They did what they thought was best. "Let it go and move on." "It must have been for the best." "There must have been something wrong with the baby."

"This happens sometimes," the doctor said. His eyes widened when I snapped at him. "No, it doesn't," I responded angrily. “Not twice in a row.” After the first miscarriage, I had researched and read everything I could get my hands on that talked about miscarriage. I knew that repeat losses -- even just two in a row -- were indicative of a problem, especially at my age. I insisted they take a tissue sample for analysis. I demanded they get in touch with my obstetrician. And I didn't take no for an answer.

One in four pregnancies end in miscarriage, according to the American College of Obstetricians and Gynecologists. In many cases, a miscarriage is an anomaly and women go on to have healthy pregnancies. In other cases, women find themselves thrust into the heartbreak of recurrent miscarriage – two or more pregnancy losses in a row. Fewer than 5 percent of women experience this, according to ACOG.

I was in the latter group. In total I lost five much-wanted pregnancies, and my doctors were never able to determine the cause.

The hardest part was when I tried to talk about what I was feeling, no one was comfortable with hearing my grief. Even the therapist I went to — for one session — blew me off. "Your life isn't that tough," she said.

I quit trying to talk for a very long time.

The third, fourth and fifth losses were not as traumatic as the second miscarriage. It reached a point where I could feel a shift in my hormones, each time shortly after the 8-week mark, and I knew the end was coming. While I hoped each time that the pregnancy would continue — and did everything in my power to ensure it, from high-level testing to daily heparin shots — they certainly compounded the grief because no one could tell me why it was happening.

We finally stopped trying after the fifth loss. I was nearing 40 years old and began thinking about the practicalities of starting with an infant at that age. So in addition to grieving the pregnancy losses, I was grieving the loss of the dreams I had for my family.

It's been 18 years since the last loss in February 2006, but I still think about the babies who could have been. I think about the milestones – first days of school, graduations, proms — we would have experienced. I think about how my family would have looked, the kind of sibling my daughter would have been, how we would have managed all that life throws at a family.

I would say I’ve made peace with it, but it wouldn’t be entirely true. You always wonder “what if”. That was certainly a thought that went through my mind in 2013, when I was coaching a boys soccer team, and out of the blue it hit me that the boys were the same age as the children would have been had I not suffered the first two miscarriages.

While medical advancements have helped doctors learn more about the possible causes of miscarriage, society still is extremely uncomfortable with grief surrounding pregnancy. For so many years pregnancy was portrayed with glowing happiness, in spite of the fact that it is a complicated and sometimes fragile process.

The scary part is that I was lucky, and I know it: I have one lovely, healthy child, who I carried to term. It made my miscarriages more confounding, but I have her. There are many women who suffer these losses and aren't so fortunate. I can only imagine the pain they feel.

I think that's part of why so many women grieve their miscarriages in silence. It’s hard to explain the heartache that goes with one of the ultimate betrayals by your body when it seems like everyone else gives birth without a hitch.

That’s why I am sharing my experience – so others don’t feel so alone in their grief.

One important note: While I’ve primarily addressed my thoughts to the women who’ve experienced this loss, there are plenty of men who grieve their partner’s miscarriages as well. I can’t speak to that experience, but I know my husband suffered, too.

Most people think of October as Breast Cancer Awareness Month, but it also is Pregnancy and Infant Loss Remembrance Month. October 15th is designated for remembering them, with everyone urged to light at candle at 7 p.m. — for the baby you've lost, for the one lost by your sister, your mother, your best friend.

If you want to help someone who's suffered a pregnancy loss, the best thing you can do is listen. Don't offer advice. Don’t say “it’s for the best,” because that is not comforting. Don't offer suggestions of what went wrong, because they prey on a woman's worst fears. Just listen, let her know you love her, and that you're sorry she's in so much pain.

That's the best way to remember the lost little ones ... and the best way to help the mothers who've joined this club against their will.

If you're part of this club, please know that you're in my heart, and I pray you find peace and the answers that I could not find.