journey through infertility and loss

NOTE: Below is an attempt to provide an overview of my long (still ongoing) journey to parenthood, adapted and pieced together from past posts. (Warning: it’s long, so pull up a chair if you want to explore…) For a slightly abridged version of this story, please read this instead.

I first realized I might be infertile nearly 7 years ago, when I discovered that a massive fibroid was consuming my uterus. I was 32 years old, just finishing graduate school and beginning to think about starting our family. We had a plan, we were on track, if a little delayed. We had been married a few years and working hard at our jobs, on our relationship. We were evolving into the people we would eventually become, the parents we wanted to be.

Even if we had tried earlier, we would have failed. For years, I was apparently infertile and didn’t even know it. When I learned this mass had been growing inside me for years and threatened my fertility, I was shocked. The thought had never occurred to me: I might not ever have children.

I was infertile and didn’t even know it.

Against the odds

Suddenly I was facing major surgery and an uncertain future. On the first day of spring in 2002, as I awoke in recovery, my doctor gently informed me of the outcome and future risks. While she was able to remove the grapefruit-sized mass, the integrity of my uterine wall was compromised. She offered hope, but there was a chance I would never have a baby, at least without serious complications. We thought we were resolving our infertility problems before they even began. We had no idea how wrong we were.

We were told to wait a year before trying to conceive. I started a new job soon while I was healing, and we decided to start trying in the spring of 2004. A year passed before we sought help. After a battery of tests, I was diagnosed with a variety of issues — i.e., recurrence of new smaller fibroids, a blocked tube, uterine and pelvic adhesions, semi-anovulatory cycles, and a short luteal phase. With such a combination of problems, it seemed doubtful that I would get pregnant without at least some help. Later, we learned that my husband’s sperm, while plentiful and motile, had poor morphology, yet another problem to overcome.

With irregular cycles and a blocked tube, the chance of conception was greatly diminished (we didn’t even know about the morphology issue then). If I were able to conceive, the small fibroid actually blocking my one open tube plus the scar tissue from my uterine surgery would inhibit implantation. Even if I could overcome this, there was a substantial risk of miscarriage or pre-term labor. If I made it to term, there was a risk of uterine rupture or loss. Plus, the fibroids would continue to grow during the first trimester from elevating estrogen levels, resulting in an even higher risk pregnancy.

Grim prognosis. But hope is a bitch that way. Were we naïve or delusional?  I can’t say for sure.

When surgery and clomid failed, I saw a well-respected RE who said I was highly unlikely to get pregnant without one more surgery to clear the tube and remove the masses. I tried acupuncture and herbs to shrink the fibroids and regulate my cycle. I changed my diet and started yoga. But the fibroids would have to go, and soon. I wasn’t getting any younger. Tick-tock, as my mother would say.

Moment of bliss

Then in fall 2005, while taking a “break” and preparing for surgery, I beat the odds. Somehow, I became pregnant, finally, without medical help. It was some kind of miracle, or at least a fluke. Surely with my blocked tubes, uterine masses, scarring, and wacky hormones, it couldn’t be true. I thought something was wrong with my cycle. There was just no way.

It wasn’t until I saw our baby on the ultrasound monitor that I finally believed. We were shocked and overjoyed. It was the most beautiful and awesome sight I have ever seen. It was glorious. I became cautiously optimistic. When I made it to the second trimester without any issues, we were elated. Our baby boy was perfect. We had a glimpse of the most beautiful vision — our dream was finally within reach. We were blissful.

Shattered dreams, empty shell

Then it started. Everything changed. In two weeks, he was gone. 

First there was fear, then hope, then the inevitable despair.

When I began light spotting just before 19 weeks, I froze. I was put on moderate bedrest. We had no idea how serious it was. We all hoped it would just subside. No problems were detected at my level II ultrasound (except for the protruding fibroid that had doubled in size, though it seemed out of the way). I declined an amnio.

Then just before 20 weeks, I woke up in a pool of wet. Tests confirmed the worst. It was amniotic fluid. Lots of it. Somehow I had suffered a substantial rupture. We were advised by three specialists who all agreed. If the rupture did not heal, there was no hope. My baby boy would be unable to grow or develop or breathe. He would die. My womb had become a deathtrap, yet life was not yet viable outside. I was placed on strict bedrest for a week. I was at risk of infection and preterm labor with a chance of uterine rupture. Our only chance was to wait and see, hope and pray.

From the moment we were given the fatal prognosis, time stopped, ceased to exist. Our lives spun out of control. Those days were hell on earth. It was a slow, surreal blur. As I wrote in my journal days later, “There were few lucid moments in between acres of deep unimaginable sorrow, all I could feel was loss — loss of everything we have ever wanted and dreamed, loss of control, of joy, our blissful moment in time, loss of all that is pure and good. All that was left was pain and sorrow. An empty shell.”

We curled up in a cocoon and took comfort in each other, M and I. Against the odds, we hoped and prayed and wished. We sobbed and begged. Yet with each drop of fluid, each drop of blood, I knew our son was slipping away. This little being, our first and only child, was dying inside me and there was nothing I could do for him. There was no way to change this cold, hard irrefutable fact. How cruel this twist of fate. My heart was breaking. My insides ached. This primal pain was like no thing I have ever imagined. 

I was trying to find a way to say goodbye. My body was failing us, it betrayed us. My love was not enough. We had been defeated, we were nearing the end. There was no going back, no dream of redemption. Rubbing my belly while weeping from the inside, I pleaded forgiveness from my son. I wrote, “I’m so sorry I failed you baby. I’m sorry I could not sustain you, I could not nurture you, that I could not keep you safe just a little while longer…”

Despite all of our hopes and prayers, we lost our baby boy at 21 weeks gestation, on February 3, 2006. Nothing could be done. We were devastated. Part of me died that day with him. Nothing could have ever prepared me for this. I became an empty shell. 

In the days following, I poured my heart and soul into my journal and poetry while mourning and wailing. I didn’t understand how this could have happened. I wondered how I would ever live through such unimaginable pain and anguish. I didn’t know how I would make it to the other side. I had no compass, no roadmap, no guide, no light. I was lost. 

Beyond the horizon: picking up the pieces

In the two and a half years since then, I have found ways to integrate my grief into my life. I read and wrote a lot about the inner and outer worlds of grief. I sought counseling. When I was finally able to breathe, the only thought that kept me going was that we would try again. I would get fixed and we would try again. So I pulled myself up, and we made a plan. But it was not so easy.

So we were back to the beginning, with nothing to show for it but heartache.

I had to consider the chance of this happening again. Preterm premature rupture of the membrane, or P-PROM, is rare and occurs in just 1-2% of all pregnancies. How’s that for crap odds? Yet if I were ever to get pregnant again, one study puts my chance of it happening again at 1 in 3. We told ourselves we would have the best care, that we would do whatever we could. It was not much, but it let us look forward.

It had taken a year and a half to conceive our son. By now, I was nearly 37. I returned to my ob/gyn to remove the fibroids that I believe caused my rupture. In hindsight, this was a mistake. Though I can’t say the result would have been different, we could have at least saved some time had we gone straight to the RE. My ob/gyn thought the surgery was a success (it was not), so we tried on our own for another 6 months before finally returning to my RE in late 2006. Lesson learned, too little too late. 

My RE performed two surgeries to repair the damage, in December 2006 and February 2007 (one year exactly from the day our son died). The first procedure was so extensive that it took more than four hours and she didn’t even get to the fibroid. The scene inside sounded gruesome. Apparently I never healed from my first surgery in 2002. In more than 20 years, my RE had never seen a case like mine.

Both tubes were damaged and one was closed. While the RE was able to clear them, they were weak and I would now be at risk of ectopic pregnancy. One ovary was twisted and fused to the back of my uterus and colon (yes, my colon). She finally removed the fibroids and cleared my uterine walls so they’d be receptive to implantation. She put me on a high dose of estrogen to grow my lining, and declared us good to go in April 2007.

Our last best chance

My RE was confident the procedures were successful. Encouraged by my earlier pregnancy, she urged us to try on our own. When that failed, we did 4 medicated IUIs, and finally geared up for IVF in November 2007. I knew IVF would give us the best shot we’d ever have. Not only would my eggs be plentiful, but we would bypass my crusty tubes, cure my irregular hormones with meds, and overcome poor morphology with ICSI. It was our last best chance. 

I responded well to the IVF protocol. My RE retrieved 32 eggs, 20 of which fertilized (8/17 via IVF and 12/15 via ICSI). We had 15 high quality embryos, and transferred two beauties. When they failed to thrive, I was devastated. We had one chance and we lost it. Next we geared up for an FET, though we questioned whether it would work. When my lining failed to grow despite my greatest efforts and the FET failed, all hope was lost. I was a barren wasteland.

The elusive dream

While my RE has reassured us that we could try again with success, we simply didn’t want to keep throwing our precious resources (i.e., time, energy, emotions, my body, money, etc.) down the “black hole” of treatment. Maybe I could get pregnant from another fresh cycle, or an FET. There is always a chance that the next cycle could work. But our resources are limited. It’s hard to know when it’s time to cut your losses. Every person’s threshold is different. That doesn’t mean one person wants it more or less, necessarily. Each person’s limits are just different. 

In all, I had 5 surgeries in 6 years, nearly 5 years of actively trying to conceive, countless hours of acupuncture and pounds of herbal remedies, 3 months of clomid, 4 IUIs with injectible meds, and 5 excellent quality embryos transferred through IVF and FET. Yet our dream continued to elude us.

When we turned away from further treatment yet knew we would not conceive on our own, I was lost without measuring my life in two-week increments. I cried every day from a place deep within. I’d collapse in a pile on the floor, in my favorite chair, the shower, in my car. I wept to release the pain, one drop at a time. 

The tears don’t flow as freely these days. I am stronger than I know. Yet I imagine I may grieve for a lifetime. I still grieve the death of our son, our only child. I grieve our inability to have other biological children. I have grieved on so many levels that I can not separate the intricately intertwined layers. This is natural for so fundamental a loss. Infertility creates a void in my life. It undermines identity as a woman, my worth as a human being. 

It’s not just the genetic link to our child, the empty stumps on our family tree. It’s the duality of joy in my heart when I see my nieces and nephews, yet sadness for the absence of my own children. It’s feeling isolated and alienated from my loved ones. It’s being misunderstood, pitied, judged. It’s reclaiming my life from the deep scar infertility has imprinted on it. Now, it’s facing the future and letting go…

A new path...

After searching our hearts with much reflection, we realized that becoming parents was more important than becoming pregnant again. And so we have begun down the new path of domestic open adoption, with open hearts and minds. We know another long road lies ahead, but we have taken the first steps on the next phase of our journey. While infertility will always be a part of me, our dream of parenthood has been re-imagined, reborn. And so we move from hopeless to hopeful, slowly but surely... 

Many thanks for sharing this journey with me.