Fragile X and IVF: The Peace of Knowing We Tried

As an entrepreneur, I thrive on making something out of nothing. I don't wait, wish, or hope for an outcome. I make it happen. But when it comes to fertility, it’s about "trying" to conceive. Sometimes, just trying doesn’t feel like enough. When your life savings, your time, and your physical body are on the line, trying can feel like false hope. It can feel like gambling.

And yet, we try.

When my husband Matt and I decided to try IVF, it was against all odds. In fact, one doctor told us it was “futile” — don’t bother.

That was after reviewing the results of our genetic counseling at Mt. Sinai. Genetic testing was the first step we took in building our family, and thankfully, that data saved us from even more heartbreak and lost time.

During that meeting, we learned we were both carriers for PKU, a rare metabolic disorder, and I was a carrier for Fragile X, a genetic condition that causes significant intellectual disability. Fragile X was a brutal double-edged sword. Not only did being a carrier severely diminish my ovarian reserve (i.e. one egg per cycle), but because the gene expands every generation, testing showed there was a 90 percent chance our child would not just be a carrier; they would have the full syndrome.

Despite this steep uphill battle, we decided to try. We knew we wanted to be parents, and because I was young and healthy, we still had a shot. More importantly, we knew that if we tried, we would have peace. No matter the outcome, we would know we put our absolute all into it. We could explore our options — whether biological, an egg donor, or adoption — and make an informed decision so we would never look back and wonder, “What if?”

But even with the solace of trying, we needed a plan. We had to be deliberate about the financial, emotional and physical toll IVF would take, let alone the sacrifice of time.

We started with IVF. When we encountered canceled cycles at the highest medication doses, we quickly explored ways to pivot. Enter Columbia University Fertility. At the time, Dr. Zev Williams had recently innovated a lower-hormone approach catered to women with diminished ovarian reserve. The protocol prioritized lower stimulation and mainly oral medication, with the hypothesis that one could achieve the same, if not better, results than with the highest doses of injectables, all with significant cost savings. Given my limited egg supply, a less invasive approach was highly compelling.

And it worked. One egg for one embryo. We continued to create and bank embryos until we were finally ready for the first transfer. But that milestone resulted in a miscarriage, poorly timed to the first anniversary of my Dad’s sudden passing.

We became deeply concerned about losing our precious embryos, which we had created against all odds. To protect ourselves from this mounting trauma, we made a strategic decision. We would try a maximum of two more times before pivoting to surrogacy. Ultimately, that pivot became the necessary path to safeguard our hard-earned embryos.

Trying to conceive takes a significant, undeniable toll on your time, your finances, and your physical health. With that, simply trying to get the eggs, the embryos, and the baby wasn't enough to give us peace. We also had to cope. Given the weight we were already carrying in grieving my Dad, it felt like a Herculean effort to manage the pain, especially as it intensified with each passing cycle and new loss.

Being intentional and proactive about our coping strategies became just as essential as our medical plan. Managing compound grief alongside a demanding medical protocol meant recognizing that self-care was a strategic necessity. For us, intentional coping meant advocating for my physical and mental baseline. It meant taking deliberate breaks between cycles when the trauma became too heavy, even against the relentless urgency of my biological clock and the heavy weight of Fragile X on my reserve. It meant digging deep into what health and happiness truly meant to us: creating mantras to survive the days and leaning heavily on my Dad’s wisdom.

By the time the third and final attempt arrived, and failed, I was still submerged in grief. I wasn't entirely ready to move on from the idea of carrying, but remembering my Dad’s wisdom (“If you want to be a parent, you’ll be a parent") made me ready enough. Signing up for surrogacy was not defeat; it was simply the execution of the logical plan we had created upfront to safeguard our hard-earned embryos.

Right up until the birth of our daughter, my mind was racing with the terrifying thought:

What if it doesn’t work out?

But then, there it was again - the other what if.

What if it does?