“Missy, I am calling to discuss the genetic results from your Counsyl test,” my OB said over the phone one February afternoon in 2014. At the time, I was just ten weeks pregnant. Like many Jewish couples, Yan and I underwent genetic screening early in our pregnancy. Prior to this call, my main concern as a newly pregnant working woman in America was how to attend the numerous doctor appointments when my job wasn’t showing much flexibility. This concern soon changed.
The doctor’s voice slowed as she delivered the news. We are both carriers of a hearing loss gene called Connexin 26, she told us. This means a one-in-four chance that the child I was carrying would have profound hearing loss. I remember how the doctor paused after she gave us this information, as if to prepare us for another blow. “You will also need undergo IVF for any future pregnancies, if you want to screen for the hearing loss gene.”
For those who are new to the world of fertility problems, IVF is the process of fertilization by extracting eggs, retrieving a sperm sample and then combining an egg and sperm in a laboratory dish. Since we have a known genetic issue, the embryos are then sent to a lab for preimplantation genetic diagnosis (“PGD”), where a cell is removed for genetic testing. The goal at the end of the process is to have at least one embryo that is tested for chromosomal normalcy and for known genetic mutations, which is then implanted back into the uterus where it will hopefully establish a pregnancy.
Three years later, I found myself at NYU Fertility Center, where I underwent a full physical, a saline infused sonogram (to ensure the fallopian tubes are functional and that the uterus is normal) and what seemed like 20 vials of blood before I was determined a candidate for IVF and PGD testing. Four months after that, I had completed a cycle. We had spent thousands of dollars. My body hurt. My emotions were all over the place. And unfortunately, we will do it all over again in the coming months.
For parents in our shoes who are confronting the reality of screening future pregnancies for genetic hearing loss, I thought I would share my main takeaways:
- The timeline is SLOW especially when you include PGD testing. Once I was cleared for IVF, we started the PGD testing. Yan and I both gave blood. Sonya gave a cheek swab as did our parents (they were able to mail them into the lab). From there, the lab went to work creating a “probe” which is a test they perform on the future embryos. We could not start the IVF process until the probe was complete, which took about eight weeks. We used Natera to create the probe, and they were great to work with.Once the probe was complete, I had to wait until my next period. The IVF cycle started on day two of my period and was complete around 12 days later. Then I had the retrieval, where the eggs are removed from the ovaries. Four weeks later, the results. All-in-all, it took five months from beginning to end. My future cycle will not take as long, however, since the probe has now been created and can be reused in the future.
- The injections were the least bad part of IVF. My prior knowledge of IVF was limited to the fact that there were injections. Lots of them. And I would have to do them myself at home. The idea of the injection is much worse than the reality, however. In fact, they weren’t hard to administer at all (especially after childbirth, I mean, come on 🙂 Every morning and/or evening I administered at least two different medications subcutaneously – meaning just under the skin. The needles are short. Having my eyebrows threaded every couple weeks is WAY worse 🙂 My favorite part of this process was forcing Yan to watch. It completely freaked him out and I definitely dramatized the pain. I considered this my revenge for the fact that for women IVF is a bitch of a process. Men have no idea.How the medications affected me, however, was another story. Manic is the best word to describe it. The first week, I felt great. Bloated sure, but great. I was happy. I went shopping and bought way too many clothes. I explained to Yan later that this was due to the increase in estrogen levels (although it also could have been due to the fact that the Summer ’17 collection at Joie was pretty cute this year :)The next week things quickly went south. My mood tanked. The smallest annoyance or frustration would cause me to break down and cry. While I was completely in love with Yan the week before, this week I wanted to murder him. Poor Yan. Even Sonya noticed the drastic mood shift. To this day, she continuously asks me “Mama are you happy?” I wish I could have hid my emotions better.
- The retrieval especially was tough. This was the first time I had gone under full anesthesia, so I didn’t know what to expect. I cried as soon as I woke up from the pain. The nurses administered some kind of narcotic that helped. I was up and walking a few hours later but still incredibly sad. It took about two weeks for the hormone levels to stabilize. Worse still was the fact that I was bloated for a month after retrieval. I looked six months pregnant and felt I had nothing to show for it.
- The odds are not in your favor. At my retrieval, I was thrilled to learn I had produced 23 eggs. An excellent number. Of those, 19 were successfully fertilized, nine embryos survived the five day mark, and a month later learned none – not a one – were normal. As you can imagine, we were heartbroken. I blamed myself. I thank God that I had such amazing support from Yan, my family (especially my mom and Yan’s mom who both flew to New York to take care of us during the cycle and after the retrieval), and above all, a beautiful and smart Sonya already in my world. I don’t know how I would have coped without them.
- A healthy pregnancy truly is a miracle. The most important takeaway for me was the realization that while healthy babies are born every day, each one is truly a miracle. I don’t think I truly understood that until enduring a failed IVF cycle. I’ll never forget it.
In much happier news – Sonya is now riding her scooter like a pro! Even better, the Bern helmet is awesome. She hears everything with it!