Coming Home Empty Wombed: Our Final Infertility Journeyby Casey Berna
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Three years ago, my husband and I found out that I have a translocation, which is a genetic mutation with the majority of my eggs. It leads to recurrent miscarriages or a baby with fatal birth defects. Three months ago, my husband and I found out we are not able to have any more biological children. The first diagnosis was really hard to accept, but we were grateful that we finally had answers as to why I had suffered three miscarriages in a matter of five months. Our most recent news, though devastating, offered closure to a difficult eight year journey battling infertility.
Between the fall of 2008 and winter of 2009, my husband and I had gone through so much to get pregnant. Though conceiving my daughter in 2007 was by no means easy (we used IUI to get pregnant), I couldn’t understand why I kept miscarrying during that following year. In January 2009, my husband and I had tried, for the first time, using IVF to get pregnant that cycle. The doctor let my embryos grow for five days before transferring one into my uterus, and then he cryogenically froze the rest of them. At the time, I was grateful to not only have this one embryo implanted in me, but to have six others frozen for future pregnancies.
Needless to say, the IVF resulted in a miscarriage -- my third in five months. It was then that the doctors decided to send my blood work to be tested for a translocation, which they suspected might be the reason for all of my miscarriages. The translocation diagnosis came back positive and the doctor said that the only option left for us to have another biological child was to undergo another IVF. Then, when our embryos were three days old, the embryos would have to be biopsied and tested for the translocation. If any of the embryos were viable then they would be transferred to my uterus. I felt overwhelmed by the process, but grateful there was a solution. Geneticists and doctors seemed hopeful that I had a good chance of having a healthy baby with this option.
I asked my doctor about the embryos from my first IVF, the six I still had frozen. My doctor told me that they could not be tested because they were frozen on day five, which means they were too advanced to undergo the long test for translocation. If I just had the embryos transferred without testing them, I would most likely have yet another miscarriage or risk having a stillborn baby or a baby that would die soon after birth. We ultimately decided to keep the embryos frozen, with the hope that in time, medical advances would lead to the possibility of safely testing 5-day-old embryos for translocation.
Three years went by and my husband and I continued along an arduous journey. We had two more IVFs done, resulting in 28 biopsied embryos. We also had one naturally occurring pregnancy. All of the biopsied embryos had the translocation and were not viable and the naturally occurring pregnancy resulted in my fourth miscarriage. We decided that we were done with IVF treatments. Now we only had the matter of our six frozen embryos to figure out.
According to my doctor, and many other doctors I consulted with, our only solution was still to transfer to my uterus three embryos at a time and hope they didn’t have the translocation and would lead to a viable pregnancy. Because I knew the odds were that they would not be viable, I was hesitant to sign myself up for a possible fifth and sixth miscarriage. Yet, I wasn’t ready to just assume they were not viable. I couldn’t just discard them. I still had a shred of hope - what if one of them were good? What if one of them would turn into the little person we were waiting for?
I tirelessly researched the internet trying to find another solution. I started reading about doctors in Australia who were routinely doing biopsies on five day embryos with great success. This gave me hope. I then found an amazing genetics lab in Chicago, the Reproductive Genetics Institute. I contacted them immediately and talked to one of their genetic counselors. They told me that not only do they routinely do biopsies on five day old embryos, but they had the facilities to test the embryos for the translocation and also transfer any healthy embryos, all on site. My dream from three years ago of testing the 6 frozen embryos was now a real possibility.
The process was not going to be easy. I had to prepare for an embryo transfer just in case there was a viable embryo after testing. Since I would be doing the transfer in Chicago, but preparing for the transfer here in New York, I had to work carefully with both teams of fertility specialists and make sure they were always on the same page. And we had to ship our embryos from New York to Chicago, which was scary and traumatizing. Talk about a fragile package!
The time leading up to our trip to Chicago was grueling and emotional. Physically prepping for the transfer was difficult for me. I had to take shots of pure estrogen, which didn’t agree with my system and left me very emotional and tired. Every day would bring more phone calls in order to ensure that everything would be in place for our trip. Some of what I was trying to accomplish had never been done before in this way, but somehow the logistics all fell into place. I am grateful to the countless number of people who made this difficult ordeal easier by their professionalism, their sense of humor, their positive attitude, and their compassion, especially to those at Westchester Fertility in New York and the Reproductive Genetics Institute in Chicago.
Finally the time came to fly to Chicago. The first step in testing the embryos is unfreezing them and seeing if they survive the thaw. Right before we boarded the plane, we got word all six survived and were looking great. Upon arrival in Chicago, we waited in the hotel for the phone call from the Reproductive Genetics Institute. This call would tell us whether the 6 embryos that were being tested were viable. It would tell us once and for all if we had a shot at having any more biological children.
We had prepared the few people we told for bad news. The truth was that all of the pregnancies I had had and all of the embryos that were tested, were not viable, so the chances were that these would not be viable either. Our parents told us not to be so negative, but to have hope. It could work out. The embryos could be good. We had one daughter already after all. If I was being completely honest with myself, I would have to admit that I really did have hope. On the flight out to Chicago, I couldn’t help but hope that I would have another passenger growing and hopefully implanted inside of my womb on the flight home. When I got pregnant with my daughter through IUI in 2007, I remember seeing six eggs in the scan right before the insemination. She ended up being one of those lucky six that made it. Now we had another six embryos being tested. One of them definitely could be lucky.
I also started to feel like I was in a Lifetime movie. We had been through such a difficult journey these past few years. Almost always in the movies, the characters hit rock bottom, but through perseverance, hope, and determination, things seem to turn around. I had thoughts of the hundreds of people who all did their part to get me to this point, from the doctors and their staff, to the person making sure the embryos were delivered safely, to the flight attendant who got me to Chicago. This was it, the moment we all had worked for. I kept thinking how wonderful it would be to surprise our friends and family with pregnancy news around the holidays as I would be just ending my first trimester. I would then recount the epic story of how it all came to be.
My husband and I were watching "The Hangover 2" in our hotel room when we got the call, much earlier than expected. As if the movie wasn’t punishment enough, more bad news was coming our way. None of the embryos were viable. That was it. It was over.
Tears were shed for our lost embryos and ultimately for our lost dream of having a family in the way we always thought we would. We had been mourning this dream for a long time now, and mentally had expected this outcome. This was the final piece that was left to be resolved. This was our closure. We now had officially done everything physically and humanly possible to have more biological children. But it just wasn’t meant to be.
I was sad for weeks and both emotionally and physically drained from the whole experience. I have to say that I also felt immediately grateful and relieved to be officially done with my journey with infertility treatments. I feel a lot lighter knowing that I am done with tests, shots, doctor appointments, arguing with insurance companies, dealing with pharmacies, surgical procedures, and just feeling like my body is not mine. I have recently been talking to friends going through infertility and I can see the physical toll all of this takes on them. I was that person for over eight years.
Most of the crying I did in the hotel room in Chicago following the news was truly tears of gratitude for my daughter. I don’t know how she got here to us. She is amazing, healthy and happy, and she brings so much joy into the world. We are so very lucky to have her. If we choose not to expand our family through other ways, we still will have more love in our lives than we could have ever imagined. We are certainly blessed.
My husband and I had gone out to Chicago on a hope and a prayer that our crazy plan could work. We came home hoping and praying that time would heal our hearts and open them to whatever was next on our journey. Now that three months have passed since our return from Chicago, I can say that I am doing better. I feel stronger, more hopeful and happier than I have been in a long time. I am looking forward to a 2012 that doesn’t involve surgeries or daily vaginal ultrasounds. I was very happy to give away all of my maternity clothes. My family and I have two goals in 2012, to have more fun and to see where this broken road may lead us. And I have a feeling my Lifetime movie will not end here.