Each year in the U.S. around 24,000 mothers will endure the heartbreaking ordeal of a stillbirth. Yet more, 1 in 4 according to national statistics, will experience a miscarriage — a sudden and spontaneous end to the pregnancy. A stillbirth is commonly mistaken as a full-term birth in which the baby has already passed away before it is delivered, but a stillbirth can occur at any point between 20 and 38 weeks, and the causes are not fully understood.
What you can be sure of, however, is that you won’t hear about it. It’s not discussed in the media and, as with most women’s health issues, women are not encouraged to talk about it. A publicist from a prominent health-oriented PR firm once said to me, “breast cancer is a ‘sexy’ cause, but other women’s issues are not, so nobody wants to talk about them.” We are expected to suck it up and deal with it as part of being a woman, and there is a very real veil of silence.
When I experienced my own loss at 13 weeks, which involved a traumatic hospital stay, I was convinced that I had done something wrong because I didn’t know anyone else that this had happened to. It was only when I told female friends and family that many of them came forward with their own stories of loss. I was amazed that there were so many that I had never been aware of. Even my mother had had a similar experience that she still couldn’t bring herself to share with me; I learnt of it through my older brother.
There is such a cultural emphasis on rosy, blooming pregnancies and a successful birth being part of a woman’s “fulfilling her destiny” that when things don’t go well, women feel an enormous sense of failure. Furthermore, the sweeping under the rug of an issue that affects over 25 percent of pregnancies means that when it does hit, women are totally unprepared in every way.
In 2007 Regina Binz went for a routine 17-week ultrasound. “While I felt like something was wrong, I didn’t ever imagine that he would be gone. I know too much because I work in the field of genetics, and I know this makes me worry too much. But I felt like the baby wasn’t moving, and I kind of thought I was going to find out that I had a Down syndrome baby. I refused all the blood draw until after I had the ultrasound because, for some reason, I just knew it was going to be something else. Then I found out that there was no heartbeat, and at that moment everything changed for me.
“That was a Friday. I went in on Saturday to be induced, and I delivered on Monday evening. That was just three days of hell. I knew that I wanted to see him, but even with working in the field that I’m in, where we actually do genetic studies on fetal demise, I didn’t really know what to expect. When he was brought to me it felt more like a pathology specimen than my baby, and I think part of that was because the nurse was young and uncomfortable, and she didn’t really know what to do. Obviously, it’s not a good situation for anyone.
"They brought him to me three times, once wrapped in one of those blue medical towels and then once they had a tiny smock gown that was close to his size, but the third time, and the time that they took his pictures, he was in something that would have fit a two or three pound baby. It was incredibly disturbing. I don’t know how to describe it. It was… I don’t want to say it was ridiculous because I don’t want to insult the women who made the beautiful smock gown, but it was like putting a Barbie doll in something for a preemie. The size difference was overwhelming and awful.
"All they were trying to do was show as much respect as they could with what they had. They didn’t really have much available. My mother was involved in the Extension Homemakers, and they were always looking for projects and things to do, so she suggested that she and her friends do something. At this point I didn’t really care about anything else. I thought, ‘Oh mum, just stop.’ This was in April, and then on Ryan’s due date in October, I was just really grief stricken. I saw that my mom and her friends were doing a beautiful job making layettes for stillborn babies, but just like every other person who tends to give these things to the hospital, they’re too big for these tiny 17-week babies. I knew something needed to be done, but I didn’t really realize I was the person to do it. I kept thinking somebody else would get it right if I just kept prodding them. After much trial and error, over several months, I finally got it right. I eventually came up with something after several nurses told me what they needed.
“But I was only getting the same lukewarm feedback from the same nurses, and I wanted to take it to a new recipient — new nurses — to get a fresh point of view. So I went on a road trip, and I’ll never ever forget it. It was Black Friday of 2008, and the significance of it being Black Friday is not lost on me because it was the day after Thanksgiving and people were shopping and I was still not wanting to care about anything. People were trying to tell me how I should feel. I should be happy. I should be this. I should be that. I should think about my child. And that just makes it worse. Don’t tell me how to feel! Family members were angry with me that I wasn’t shopping with them, but I had another plan and that was to drive around the hospitals. The very first hospital that we went to, we walked in and presented our letter introducing ourselves. The nurse looked at me and said, ‘Are you serious?’ I thought, ‘Oh, great. We’ve got somebody else who thinks we’re crazy.’ Then she started crying and said, ‘We have a mother about to deliver too early, and we don’t know what we’re going to do for the baby.’
“I’ve heard people saying about feeling instantly liberated, like a weight was lifted off of their shoulders. In that moment that happened to me, and it was so overwhelming. I instantly felt that relief, that ‘Oh my god, I’ve got this right and this is what I’m supposed to be doing.’
“What I say is, sometimes God gives you signs, and sometimes he hits you over the head with a bolt of lightning. I think that was a bolt of lightning because I was really reluctant up until that part. I was like, ‘Okay, this has not been easy. If this trip doesn’t work out then I’m out. I’m done.’ Then the first place that we go the nurse starts to cry immediately. From that moment on Holy Sews was born, and I haven’t thought twice about it. It didn’t matter what people said to me or if they discouraged me. I wasn’t going to be stopped at that point. There are so many incredible stories from these last 10 years, and they keep coming, so I just keep going.”
At that point Binz probably never imagined that one day she would have letters of thanks coming in from all over the country. One such letter came from Katie Jones, 1,200 miles away in New York.
“When my daughter Neriah Grace was born on November 24th of 2014 I was just 17 weeks pregnant. She was born alive, and they put her on my chest where she passed away. The nurse came in after a little while with a Holy Sews layette that had been made by their New York chapter. (By now, chapters of Holy Sews had sprung up across the country.) Getting it that day meant so much to me that I contacted Holy Sews and asked if I could help, and that’s how I met Regina.
“It was really wonderful. It was just so nice knowing someone who had been through what you had. Of course everyone’s experience is different, but we still had so much in common. So she got me to start bringing layettes to hospitals and put me in contact with the New York chapter. I actually have a box sitting here in front of me right now that I’m about to go and deliver. I also give them to my mom who lives outside of Boston and my sister who lives in San Francisco. Our family collectively has spread them all over the Capital District of New York, Boston and San Francisco.
“Regina has been our support system too. When we lost Bradford William in 2015, it was I guess closer to Regina’s situation where we went in for our 20-week ultrasound and discovered things weren’t right. Two nights later, in the comfort of our own home, our midwife confirmed that there was no hearbeat. I was induced the next day. Holy Sews was so supportive. A lot of people only lose one, so people were kind of shocked when it happened again to us. I don’t know if people usually give up and then don’t try again, which is why it’s not so common to lose a second child. But we did, and it didn’t work out again. It was truly devastating.
“Holy Sews send you many keepsakes with the layette (a blanket, a bear, and a card for the baby’s footprints and birth information). It was nice to have the tangible things to hold since we left the hospital empty handed. The keepsakes are a constant reminder, to this day, that others acknowledged that our baby existed.
“I wish that this part of pregnancy was covered in national media and talked about more openly. It happens to so many people. Families need support after experiencing loss like that. The second loss blindsided us again and I needed help coping. Looking back, one of the best things was just having other women who had walked down this path before, who understood what I was feeling when so many people didn’t. My own parents and my in-laws didn’t understand, but a few friends and the women at Holy Sews did.”
Binz concurs that a lot of people don’t understand or drastically underestimate the grieving process from such a loss. “I think the people who were most concerned about me had that same frame of mind that Katie’s family had. They thought I was wasting my grief. They didn’t really mean anything bad towards me. I think that they were concerned that I was not dealing with it in a healthy way. It’s all a matter of your perspective. The older generation was raised with a ‘you are supposed to get over this’ frame of mind. But there are so many wonderful things that I have been able to do as a result of my experience.
“On October 15, 1988, Ronald Reagan proclaimed October 15 as International Infant Loss Awareness Day, and every year at 7 p.m. in your time zone you are supposed to light a candle for an hour so that there will be a wave of light around the globe. This will be the fourth year that I’ve managed to get all the hospitals in the area and several bereavement non-profits to come together on that day. Nobody’s making any money. We just invite people to come and see that they’re not alone and maybe find a support group that they can belong to. One of my board members is Linda Deymaz; she wrote a book called Mummy, Please Don’t Cry: There Are No Tears in Heaven, and it’s very popular. She reads that at 7 p.m. when the searchlight lights up the sky. It’s so spectacular and powerful. It’s like you’re safe to grieve. You’re safe to do whatever you need to.
“When you know you’re in a group of women who have lost a baby, and you may be in different stages of your grief, but you’re there together, there’s something very peaceful about that. Strangers hugging each other and saying, ‘I’m sorry for your loss.’ This will be the fourth year that we’re doing that here, and I’m really excited about it because it just keeps getting bigger every year. We’ve had about 200 people for the last several years. We’re working on a tool kit to guide other people around the country if they want to plan a similar service. We have so much going on. We just received a grant to create a video we can send out as a kind of tool kit for bereavement purposes. We are able to unite numerous hospitals and clinics and funeral homes and families. It’s not about any one person, which is what makes it so wonderful.”
Happily, Binz is now mother to two daughters, 16-year-old Torrie and 6-year-old Julia, “who is my rainbow. She reminds me more often than anyone that she has a brother in heaven. The innocence of a child is so beautiful. Women are afraid to share their story, but I think it’s necessary to share these things with your children because they’re more matter of fact. They’re less judgmental about you telling them that you had this thing happen.”
Jones is now proud mom to Annelie, 6; Tripp, 4; and rainbow baby (first born after miscarriage, stillbirth, neonatal death or infant loss) Kirsi, 7 months. But, as with all mothers who have lost a child, they still consider themselves mothers to their “angel children” who didn’t stay with us but who had a profound impact. Not least in teaching us the fragility of life and to be wholly grateful for the immense blessing that children truly are.
A Nurse’s Perspective