Interview with Deanna Roy, Part Two
Deanna Roy is the creator of a website, publishing company and books about pregnancy loss
Deanna Roy is a writer, photographer, publisher, and a mother of two children and three angel babies.
is the creator of Facts About Miscarriage, a comprehensive pregnancy loss website that has provided helpful information and sources of healing
to women for over ten years.
It was my great pleasure to interview Deanna about her own journey through loss and healing, her pregnancy loss info website, and her publishing company, Casey Shay Press.
Deanna and "A Place for our Angels"
The Interview: Part Two
you tell me about your pregnancy losses, and if possible, the main things that
helped you heal?
Deanna: I lost my first baby, Casey Shay, in 1998 at 20 weeks gestation. At our sonogram to determine the gender of the baby, we discovered he did not have a heartbeat. On the rather adamant recommendation of my doctors, I had a D&E procedure rather than labor and delivery, a decision I regretted very much and led me to start my web site.
My second pregnancy was stressful and difficult, with all sorts of dire predictions after they discovered midway that the reason for my first baby’s death was multiple malformations in my uterus, and the new baby was at risk. But she got here just fine, and is now 12 years old.
In 2001 we started trying again for a new baby. We lost the next one immediately, at four weeks, Daniel.
We immediately tried again. I got pregnant again late that summer, just before the tragedy of September 11. I remember thinking that day, “What sort of world am I bringing more children into?”
We had an overseas trip planned in October to visit a friend whose wedding I had missed. The planes were mostly back on schedule, so we went. We didn’t tell anyone we were pregnant as we didn’t want anyone to worry.
On the 12-hour flight home, I stood up to stretch and felt a pop and a gush. I was only 9 weeks along. I went to the bathroom to see everything soaked with pink-tinged yellow water. By then I had been running my miscarriage web site for three years and I knew there was nothing anyone could do. We still had ten hours to go to get to the States. This was the longest, most horrible flight of my life, and it took years to get past the post-traumatic stress of flying.
An odd thing happened, though, in that I stopped bleeding partway through the flight. I knew this wasn’t normal for a miscarriage necessarily. So I refused my connecting flight in the US and we drove home. I also refused medical care in the other city, as I really didn’t want some stranger telling me my baby was dead. I knew there was no way to intervene.
I had a sonogram a few days later, and by then I was 10 weeks. But it showed no baby, only a partially filled sac. I thought it was over and waited to bleed again. But the doctor’s office called to say my hCG numbers were very high. They had me come back a week later, a long stressful week where I tried to stay in bed as best I could with a toddler. I wasn’t bleeding, but I had no idea what was happening. None of us did. This time of my life helps me empathize with other mothers in this predicament. It’s a no man’s land. The most dreadful place you can be is not knowing whether your baby is alive or dead.
When I returned for the follow up, there was Elizabeth, perfectly developed for her age. The other sac had collapsed further and everything began to make sense. The one sac had obscured the other and my numbers were so high because this pregnancy had begun as twins.
I was not as sad about this as I might have been. I had one baby in heaven and one on earth with me. This was the best-case scenario I could have conceived—each of my children would get a brother or sister with them. We named this lost baby Emma Hope.
Honestly, I’m not sure I ever really healed from my losses completely. Certainly at the time making the web site was a big part of coping with my first loss. I had resigned my job because my first baby was due at the beginning of the next school year, so a few weeks after he died, I found myself without a job or a baby, and learning to make web pages was something to do while I looked for a job.
I think having Emily certainly helped when facing the difficulties with the other losses. By then I was very established in the loss community, and the support was everywhere—I had made sure we could find each other by then.
Nicole: You created your first pregnancy loss website over ten years ago. Were there any resources available on the internet (or elsewhere) at the time you created your website?
Deanna: I started looking for resources immediately, in April 1998, the day we learned the baby had died. At the time there were a rare few medical sites with a few paragraphs about miscarriage, but really you still had to buy books to learn anything.
One excellent resource that still exists is Inciid.org, an infertility web site. They had a forum where a doctor answered questions. One of the subtopics was miscarriage, and I literally lived there in the weeks after my first loss. The members all got to know each other for support. It was the only place to go to talk to other women, but the interface was awkward and being forced to sign up for a profile with your personal information was not popular back then. Still, we did it.
My site began in 1998 with a free Geocities site. I migrated it to a subsection of deannaroy.com in 2000. You can see it as it was then on the WayBack machine for Feb. 2001. I bought pregnancyloss.info the day the new extensions became available in late 2001.
The Wayback machine has it at its new location as far back as Feb. 2002.
Deanna's Website: Facts About Miscarriage
- Facts About Miscarriage
At this site you will find information and a place to come in your dark and frightened hours. The special features of the site include information, healing and hope as well as discussion on causes, prevention and trying again for another pregnancy.
How "Facts About Miscarriage" Began
Nicole: Your presence on the web is obviously the result of hours upon hours of time and dedication. What prompted you to create the "Facts About Miscarriage" site? Did you always envision that it would include such holistic content and detailed information? Will you ever stop adding to it or maintaining it?
Deanna: My site began so simply. I got a free Geocities site just as personal pages (laden with banner ads) were becoming popular. I didn’t know anything about how to do it, but I didn’t have a job and I was alone all day. Several of my friends were pregnant and those relationships were not going well as they were all planning showers I fully intended to boycott. I was very alone, so the internet saved me.
At first all I put up were little stories about being pregnant, laden with sparkly animated gifs and midi music. I wanted to remember every detail, as I had so few memories. With no job, I had time to write it all down.
At our follow up appointment, we discovered the genetic tests had failed. I was devastated, as the reason I’d allowed the D&E rather than labor was because they assured me we would find out the gender of the baby. We’d even named him Casey Shay so that the names would go either direction.
I loved my doctor, but I was angry, and wrote him a letter about how he’d failed me. Maybe the surgery was easier at the time, but now I had to live with this decision the rest of my life.
I went straight home and began typing up all the reasons to choose one delivery option over the other. I didn’t want any other woman to go through this without having information.
Once that page was up, I learned everything I could about how to help people find it. If someone was going to go to Excite or Yahoo (the big search engines at the time), I wanted to make sure it showed up.
I never thought it would be a big or comprehensive site. But there were so few resources and all of them were segments of generic medical sites. None of them felt personal or compassionate.
I think because my web site was written by someone who had gone through it, I started getting emails. They asked me questions, and I had time to look up the answers. I did Internet searches. I read books. I called my ob/gyn when I got stumped, and the office was always very nice about answering questions obviously not about me.
What I discovered is that while we are under duress, we can’t listen. We can’t process the instructions and information our doctors give us right after telling us our babies have died. So it’s hours or days later when we realize we don’t know what we need to know. Some people will call the doctors back, but most will not. They turn to the web.
So my idea was that as I researched each answer I would put a page up for it. The early pages were definitions of terms on the medical forms, one of the only clues you sometimes had to what the doctor thought had happened. I also thoroughly explained everything that would happen during a D&C and D&E, with far more graphic details than you could find anywhere else. Those gritty details are what we need when we’re bleeding or in pain and not sure if it’s normal or something to rush to the hospital for.
I remember being excited back then that 25 people had visited in one day. At this point 4000 people visit the site each day to create some 10,000 page views.
My first baby’s due date is Sept. 13. I generally roll out a new site feature each year on this date. The time I spend on the site is the time I never got to spend with him.
I Can Make Life: Poems About Infertility and Miscarriage, Pregnancy and Birth
About Nicole Breit
Nicole Breit is a published author and poet. Her debut poetry collection, , explores the physical, emotional, psychological, and spiritual impact of fertility treatments, pregnancy, pregnancy loss, and birth. I Can Make Life was a finalist for the 2012 Mary Ballard Poetry competition. Her essay, “For Tristan: A Meditation on Loss, Grief and Healing” was published in The Sound of Silence: Journeys Through Miscarriage (Wombat Books, 2011). She is also the author of a number of online I Can Make Lifepregnancy loss resources. Follow her writing journey on her blog, Writing for my Life, or on twitter @NicoleBreit.