Remembering and Releasing the Pain

cryingwomanThe Advanced Maternal Age Project is about women sharing stories and resources so that we can provide great support for one another. It is through support and resources that we may overcome many barriers as we become mothers. Some of our stories are very sad and painful and even difficult to talk about. Time makes it easier to think about them and begin to make sense of it all.

This is one of those stories about a pregnancy and a loss. It is the hardest story to tell so far.

Elated about an engagement to a loving man, planning a wedding just a couple of months away, and the fact that I was turning 39, we made what felt like a logical choice to stop using birth control. One never knows how long it can take to conceive until one tries, was the conventional wisdom. I had read that it could take months to be fertile after being on the birth control pill. Our dream was to only wait months and not years for a child since we were older. We went on vacation and had a wonderful and relaxing time together.

That very first month, we conceived and we were thrilled with the possibility of having a child early in our marriage. The first weeks were easy, really easy with no morning sickness and no symptoms at all. Having never been pregnant, my tummy was fairly flat and I felt strong. No worries then and an exciting next stage ahead. We continued to plan our wedding and honeymoon, keeping our news a secret to all but our close family and very few friends.

Prenatal, genetic testing seemed like a logical choice for us and it was highly encouraged by our obstetrician since I was now 39 and my fiance was 47. Neither one of us had been tested before. Now we were going to test a tiny embryo.

The O.B. referred us to a perinatologist and a genetic counseling session as the first step. We were interviewed about our medical histories and genetics within our families extensively. A one hour consultation seemed to last for days. Finally we got to schedule the date for our chorionic villus sampling or CVS Testing. Watching the fine needle penetrate my abdomen and pull out cells while on ultrasound was a bit daunting but we wanted to know. Would we have a healthy baby? This was the first step. It was 2006 and the best first step given the time and circumstances.

Just about 2 weeks later came the call with the results. The genetic counselor sounded calm but then I heard some concern in her voice. “One of the chromosomal pairs is unclear and that may be a sign of a problem,” she said. Which gene I asked, knowing that they are labeled. “It’s the one that determines gender. It’s unclear but appears just to have one “X” not “XX” or “XY. I recommend that we re-test with the more accurate Amniocentesis Test in a few weeks.”

I hung up the phone and cried. Then I called my fiance to explain what seemed unexplainable.

 We would have to wait to learn more and likely undergo another test. In the meantime, I thoroughly researched the topic and contacted a close friend, Jill. She was thrilled to hear about my pending marriage and pregnancy. I then told her about the genetic issue. Jill knew about this. Her college roommate had lived with this genetic abnormality and a blurred gender. While she functioned fairly well on the surface she said, her unclear gender had caused a lot of stress for her and her family. Jill, already a mom of 3 and a practicing Catholic, said “You shouldn’t go forward. You and they will always have problems and may not have a normal life.”

During our wedding, while still waiting for the amniocentesis results, I managed to hide my pregnancy and stress. My mom and the bridal store owner knew I needed a larger-size dress but they kept our secret.

While on our honeymoon, we received the call we were waiting for. The genetic counselor had revealed that the diagnosis was a genetic mosaicism of the gender chromosome with unknown gender. This would not grow to be a normal and healthy person.

This was such an important and considered decision.

My new husband and I were on the same page. We talked about it with the genetic counselor, perinatologist and found the doctor we were most comfortable with. The procedure was simple and straightforward. I felt physically fine in just a couple of days. The pain of loss lasted until I would become pregnant again.

Though the first chapter in our story ended with a sad note, we were optimistic now that we could become pregnant and the baby that resulted would be healthy. He was conceived less than four months later and is indeed healthy today at age 5.

Leave a Reply