In 2001 I was diagnosed with a molar pregnancy. Known more formally as trophoblastic disease, a molar pregnancy is malignant tissue that forms after fertilization instead of a fetus. It can take many forms, and while it’s not always cancerous, it can spread outside the uterus to other organs when left untreated. A mole feeds on human chorionic gonadotropin (HCG), the pregnancy hormone, so women who have one most often begin their ordeal by testing positive on a pregnancy test. So it was with me; we barely had begun trying when I received a faint positive on the first test. A blood test confirmed that I was pregnant! As most first-timers would, we went crazy with joy, telling everyone and diving immediately into preparations. In our hearts and minds, he—to me it was always a boy—existed, if only for those few short weeks.
Miscarriage is common. That fact is sad but true, and losing that baby would have been devastating no matter what. Most couples grieve, in their own ways, and move on. They try again. Maybe the next one will be “the one,” right? For me, the story took a different turn. My ultrasound had shown no baby, only a “cluster of grapes” (the standard description of a mole). I was still reeling from that information when the doctor explained they had to take it out as soon as possible. I would not be able to get pregnant again for a year, and they would have to take blood every month to monitor my HCG levels. If the levels went up, it meant the tissue had regrown, and I would need to start chemotherapy.
Today, when you get a diagnosis you don’t understand, your natural first step is to Google it. In 2001 information wasn’t as freely available. I searched, but all I could find were highly technical medical sites. I finally came across one lone personal website, and in the guestbook there were hundreds of others who had had similar diagnoses. There were so many that the website owner had had to create multiple guestbooks as each one filled. Some of these women had hysterectomies because of their persistent disease. Others endured multiple rounds of chemotherapy. All of us had one thing in common: we were seeking support, but we had nowhere to go. I decided then I could do something to help myself and all of these other women. I could take this misery and grief and try to make something positive out of it. I just needed to put the pieces together.
Several elements were already in place. I knew HTML and already had a website. I was a medical copy editor, so I knew how to simplify complicated medical language. Most importantly, I knew exactly how all of these women were feeling. My first effort was twofold: a page of links on my website to medical sites related to molar pregnancy and a new Yahoo! Club—the predecessor to Yahoo! Groups—that I started as an online support group. I collected email addresses from the guestbooks I’d found and messaged all the owners to let them know about my group and my site. Then I waited to see what would happen. Within a week I had fourteen members. Within months I had dozens. Within a year there were more than a hundred. Talking with them helped me deal with my own loss. We shared information, and we became our own pool of resources. We became friends. We became a community.
As time went on, the more senior members stayed to support the new women who joined, so there was an endless circle of support. When Yahoo! Groups took over a few years later, the group had swelled to more than six hundred women from around the world. The web page had become a website by itself, MyMolarPregnancy.com, and I was posting women’s stories and photographs along with the links and information I had found. I started getting messages from nurses and volunteers in remote places in Peru and other countries, asking for advice. I was able to direct them to resources they never knew existed, such as the New England Trophoblastic Disease Center in Boston, Massachusetts, or Charing Cross Hospital in London, both of which are top facilities for the study of trophoblastic diseases. It made me feel good to help so many. I wanted to do more.
Over time it became clear that I was reaching a lot of people, but there were more out there who could benefit from the stories and information I was collecting. Not everyone was online yet, and most people still preferred books. I decided to publish a collection of women’s stories and asked my support group members to contribute. In the end, the first My Molar Pregnancy book contained more than thirty stories when it was published in 2008—including my own. I moved the My Molar Pregnancy support group from Yahoo! Groups to Facebook in 2008. Not long after, I formed a second group, After My Molar Pregnancy, as a place for women who were pregnant again after a mole to share their good news. Since then I have seen groups spring up all over the internet, and I join them so I can share the knowledge I’ve gained with as many people as possible.
When I lost the baby I had dreamed of holding, I grieved. As I endured a year of blood tests, waiting to learn if I would need chemotherapy or had developed cancer, I suffered and was angry. Yet during that time I also created something that helped me get through it all, a community of my peers whom I would never have known otherwise. Fourteen years later MyMolarPregnancy.com has helped thousands of women around the world learn more about their diagnoses, and in the support groups they have found a community that understands how they feel and can answer their questions. I am protective of my support group members, and I work hard to keep the site free of spammers and frauds. I feel for these women. I celebrate when they are cleared by their doctors or conceive after a mole or give birth to what they call their “rainbow babies.” I grieve with them when their levels rise, when they need round after round of chemotherapy, when they have second and even third moles, and when they miscarry naturally after all they have been through. They are all under my care, and I take that responsibility to heart.
If you are dealing with something and can’t find the help you need, there is an infinite world of possibilities out there to help you create it. Toni Morrison said, “If there’s a book that you want to read, but it hasn’t been written yet, then you must write it.” The same goes for any aspect of your life where something is missing: if you can’t find it, create it. There is therapy and relief in putting yourself out there and saying, “I am here. I know that others feel the same way I do. Let’s find each other and get through this together.” A recent campaign by Supernatural star Jared Padalecki is the perfect example. His #AlwaysKeepFighting Twitter and Facebook hashtag has united tens of thousands to bring awareness to the battles people fight with depression, suicide, and other forms of emotional distress. Today’s world is so connected that something as simple as a hashtag can bring together so many, and it doesn’t require celebrity endorsement to make it happen.
At my darkest hour I was not alone because of the people I found who helped me get through my pain. I found them because I went looking, and because I reached out willing to give as well as receive. The baby I lost exists forever in my heart and in the hearts of every woman who has been helped by MyMolarPregnancy.com, and I can think of no better way to honor the experience.