The New ‘M’ Word? Here’s Why We Should Be Talking About Miscarriages

The New ‘M’ Word? Here’s Why

We Should Be Talking About Miscarriages

Photo Courtesy of Medic.ua

When my husband and I had our daughter in 2001, I was 30 years old and Chief Executive Officer of a company named CarePlus Health Plan. The path to parenthood was stress-free and instantaneous; we conceived the week I went off the pill while on vacation (which we sentimentally commemorated by naming our daughter after the town of Ana Capri, Italy). Three years later, we wanted to give her a sibling, but a lot had changed since her birth.

My husband had decided to make a career change and was starting a new profession. I had my hands full preparing our company for a sale. Due to these reasons, we decided to delay having our second child until we were more secure with our career and financials.

We started trying to have a second child in 2004 and that is when we had our first miscarriage. I was 33 years old at the time and never expected it. I had a perception that because an amniocentesis was only indicated for women over 35 years old, that somehow this miscarriage was unusual. I also never expected that I would have such a strong emotional reaction to the miscarriage. I had been through significant challenges both professionally and personally, yet I found myself sobbing and despondent over the loss of the pregnancy for weeks. My husband similarly suffered feelings of loss and grief. We tried coming up with reasons for the miscarriage and went through a litany of theories including my stress level, his new medication, and the list goes on. The act of trying to find an answer created a lot of self-blame and anxiety. While we were going through this, at no point did my OB/GYN educate us about the statistics of egg quality decline with age.

"I had been through significant challenges both professionally and personally, yet I found myself sobbing and despondent over the loss of the pregnancy for weeks." Photo Courtesy of Connor Evans

Over the next four years, we suffered six more miscarriages and a devastating loss in our sixth month of pregnancy. My OB/GYN sent me for every diagnostic test imaginable, including expensive endocrinology testing, sonograms, autoimmune testing and genetic testing. I was sent to specialists to rule out underlying health conditions that contribute to miscarriages. I had numerous D&Cs (better known as dilation and curettage procedure, where the uterine lining is scrapped to remove abnormal tissues) after each miscarriage, which showed there was a chromosomal abnormality in the embryo but a different one each time.

During this whole process, I was never referred to a reproductive endocrinologist or fertility clinic and when I asked my doctor why, she said that I didn’t suffer from infertility because I didn’t have a problem getting pregnant. I wish I knew then what I know now.

During those four dark years, I learned to compartmentalize my emotions. When a woman is suffering from infertility or pregnancy losses, she can’t go to work and discuss it openly like other medical diagnoses for two main reasons: either the loss occurs during the “secret” period which is the first three months of pregnancy, or a woman is fearful that if her employer knows she is trying to get pregnant, her level of commitment to the job will be questioned and she will be passed over for opportunities. So, on top of the emotional and physical pain of the medical procedures and losses, it was such an isolating experience. People who knew what we were going through either minimized it by saying things such as, “you are lucky you have one child” or said things like, “maybe you should quit your job to reduce your stress and focus on what’s really important in life.” Or they simply avoided us altogether. All we needed during this time was support and love, yet we were treated like we had leprosy by many people, with the exception of our parents and closest friends and family. My sister called me every day to say, “I’m thinking of you.” So simple and supportive, yet so difficult for many people to understand. The only person who truly understood me was my incredible husband. And he paid the price for it by having to absorb all of my anxiety, depression and by having to prop me up when he surely felt like falling apart too.

I often say that the only person who feels more isolated than a woman suffering from infertility is her partner.

It finally reached a point where I knew I needed to seek a mental health professional. I was diagnosed with PTSD due to the compounding effects of loss after loss, without enough time to grieve and process in between. I tried my best to hide my suffering from my young daughter and colleagues, acting as if nothing was wrong. I didn’t realize until later the additional emotional toll of trying to act “normal” was taking on my psyche until I hit rock bottom and agreed to medication. That is when I was finally able to come out of my daily fog and when my doctor called to tell me that she recommended that I seek a surrogate and egg donor because my body could not withstand any more miscarriages.

Maybe it was the new reality I faced after that conversation, or the new medication, but I decided that I would not go down without a fight. I had read online about a test called preimplantation genetic testing that was fairly new at the time and performed at RMA of NY down the street from my office. I vividly remember Dr. Benjamin Sandler empathizing with my husband and I for all that we went through and apologizing that we had to suffer for so long when we could have addressed this condition earlier through IVF. He shared that I likely had an egg quality issue which was normal for my age, and with IVF, we could screen our embryos to ensure that we only implant a chromosomally normal embryo to greatly reduce the chance of a miscarriage. I think back on that meeting and remembered the only emotion I felt more strongly than hope was anger.

"I wanted to change the perception of fertility treatment as being optional."

I was furious that my doctor had allowed us to suffer for so long, which impacted my physical and mental well-being.

I was furious that there was IVF treatment, widely available for people suffering from infertility. Yet, for me, it was viewed as an “optional” treatment. I often say that if my OB/GYN noticed that I had high cholesterol, she would have referred me to a cardiologist immediately. But why was infertility treated differently?

This is what I sought out to solve seven years later. As a health plan executive, I had kept tabs on all the money the insurance company spent during those four years which included: diagnostic testing, physician visits, outpatient procedures and mental health costs. The end total was three to four times the expense of fertility treatments. We even had coverage through my husband’s company, but it was exhausted during the diagnostic testing phase. This meant there wasn’t much left over to cover our IVF treatment. Through all of this, I was intent on finding resources so that no one would ever have to go through what we had, without educational resources and emotional support. I wanted to change the perception of fertility treatment as being optional and instead drive employers and health plans to provide equitable coverage for infertility like any other disease. Fortunately, I met others willing to support this concept and today we have Progyny, a company increasing access to fertility care by carving out a fertility benefit for employers. There is still so much work to do in expanding access to fertility benefits and in recognizing that infertility is a disease that deserves full treatment coverage like any other disease.

In the meantime, there’s something more powerful that we can all do. It’s to remove the stigma of fertility conversations altogether so that women trying to conceive, newly pregnant or suffering from infertility can talk as easily about this as one talks about diabetes or heart disease. I realize now that if I was able to tell friends and colleagues during my first three months that I was pregnant without fear of social and professional reprisal, then I would have been more willing to discuss my miscarriages and fertility struggles, which could have led to the societal support and recognition that I so desperately needed. Together, let’s end the suffering in silence and talk about the F word. One conversation can change someone else’s life.

Karin Ajmani

Karin uses her health and managed care experience to lead Progyny’s employer benefits products. She aims to expand employer coverage of infertility services by providing a solution that is a beneficial for employers, patients, and clinicians.

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