Genetic Testing Results
In this post, I share the results Cory and I received from our two embryos’ genetic testing. I talk about what comes next for us in the IVF process.
People amaze me. Like really, truly.
People amaze me, but not in the typical sarcastic tone and eye roll way people are said to be amazing, like after witnessing someone texting and driving next to you on the highway. No, not like that.
People really, truly amaze me. The way we all find a way to cope with so much stuff while simultaneously “holding it together.” (And it’s totally okay to not hold it together too, just sayin’.) The way we deal with a family member’s illness, the death of a pet, infertility treatment, a broken water heater, divorce…while also somehow getting through a work day, making sure there’s milk in the fridge, and occasionally cleaning a toilet. We are survivors, and that is amazing.
And you know what? I amazed myself last week.
This past Friday morning, I was at work (as any good full-time employee is). It was 9:55 AM, and my patient and I were taking a break between therapy sessions.
(Side note: for those of you who don’t know, I’m a speech language pathologist, and I work at a rehabilitation hospital for adults recovering from brain injuries. Specifically, I work with people who have aphasia, a language disorder that can make it difficult to speak, write, read, and/or listen. I work with one patient at a time within an intensive outpatient aphasia program for three hours/day, five days/week, for three weeks. A total of 45+ hours of therapy with one patient. Talk about intensive! Learn more about the program I coordinate here.)
Back to why I amazed myself.
During this break between therapy sessions, I checked my cell phone. I saw I missed a call from the embryology department at my fertility clinic. Wait…what? Our fertility clinic told us we wouldn’t be receiving our two embryos’ Preimplantation Genetic Screening (PGS) results for 10-14 days from Monday (9/17/18). You can imagine the shock I felt when I saw the missed call from the embryology lab just five days later (9/21/18).
My patient was getting some water from the cafeteria, so I quickly closed my office door and called the clinic. Ring…ring…ring. The suspense was killing me, and I knew I only had a couple minutes until my patient came back from the break. Ring…ring…ring. A woman’s voice answered. “You have reached Conceptions Embryology Lab. Please leave a detailed message, including your name, date of birth, and best contact number.” Gah! No answer. I hung up and immediately dialed the number again. After several more agonizing rings, I heard the same outgoing message. Third time’s a charm. I dialed again, but nothing. This time I left a message, telling them I would call back in one hour.
My sweet patient walked back into my office. It was 10:00 AM and time for another hour of therapy. Cue human resilience and patience. Cue amazingness. For the next hour, I remained calm and attentive during the therapy session. The patient became my sole focus, and I let the genetic testing results slip to the background. I somehow held it together while waiting to receive the most important news…news I had 32 years of dreams riding on…news I had thousands upon thousands of dollars invested in…news that would have implications for my future family.
At 10:55 AM, my patient and I paused for another 5-minute break. As soon as he left to take a short walk around the hospital, I closed my office door, raced to the phone, and dialed the embryology lab. I quickly fumbled around with my cell phone to record the conversation so Cory could listen to it later. Thankfully, this time someone picked up on my second attempt. The woman who answered got right to it: “It looks like we had the two samples that we had sent out to Natera, and one has come back normal.” Gut punch. “Okay, great,” I said. Despite the cheery response, you can hear the disappointment in my voice on the recording. She continued on, “So we have one embryo for you. We’ll pass this information along to your doctor and your nursing team.”
Shock. Just one embryo.
After all of those injections…and the surgery…and the 12 eggs retrieved…and the 12 eggs fertilized…and the 6 zygotes that were still growing at day 3…and the 4 that were still growing a day 5…we were left with only one normal embryo.
I looked at the clock. 11 AM on the dot. Time to start therapy again. Deep breath. One is better than none. Be grateful. At least you have one. My patient walked back into the office, and we got back to work. Thankfully, I was able to turn my focus completely to my patient’s needs for the next hour. Somehow, I made it through the morning. I sat at my desk over the lunch hour and stared and my food. My mind felt tingly and numb, the way a limb feels when it falls asleep, and no matter how much I moved my mind around from thought to thought, it wouldn’t “wake up” out of that numbness.
Cory came down to my office at lunch to hear the results. (We work together, by the way. Did you know that? We work together…at the same hospital…in the same department…with the same boss. An HR nightmare. But don’t worry. We play it cool…displaying affection only through hearty high fives and passionate thumbs ups.) Cory took the news harder than me. He immediately looked like Eeyore when I told him that we only had one genetically normal embryo. “At least we have one?” I encouraged, skeptically. “At least we have one,” he said quietly while staring out the window. We high-fived it out, and he left to go back to work.
When initially processing something, I have a tendency to lean into facts and reason instead of feeling my emotions. This might surprise those closest to me who consider me a feeler. I’m an ENFJ on the Myers-Briggs Personality Inventory, and that “NF” in the middle means I’m an “Intuitive (N) Feeler (F).” According to this site, “NFs (Visionaries) are introspective, intuitive and highly idealistic. They are subjective, compassionate “feeler” people that desire to contribute goodness and meaning to the lives of others.” Even though it’s in my nature to sit in my feelings, I’m also drawn to concrete facts and evidence as a coping mechanism when the feelings get too intense.
In attempt to gather more information and postpone the actual processing of the genetic testing results, I called the embryology lab again later that afternoon to ask for more details about the abnormal embryo. I learned that the abnormal embryo was called a Monosomy 20, which means it was missing a copy of chromosome 20. If an embryo with Monosomy 20 makes it to live birth, the child may have “intellectual disability, delayed development, distinctive facial features, skeletal abnormalities, and heart defects,” (ghr.nlm.nih.gov/chromosome/20#conditions). Most likely, the implantation of an embryo with abnormal chromosomes would end in a miscarriage. “Of all miscarriage causes, chromosomal abnormalities are considered to be the most frequent explanation for why miscarriages happen. Estimates suggest that anywhere between 40 and 75 percent of all miscarriages are caused by random genetic problems in the developing baby,” (veryfamilywell.com). At least I knew that the embryo most likely wouldn’t have resulted in a viable pregnancy…and if the embryo would have made it past the first trimester, I may have had a child with developmental disabilities.
(Let me take a moment to clearly state that there is nothing wrong with developmental disabilities. Some of the most beautiful souls I’ve ever encountered were those of children with developmental disabilities when I worked at Children’s Hospital Colorado. I have never witnessed more selflessness than that of a parent of a child with a developmental disability. I have never seen more compassion than that of a sibling of a child with a developmental disability. I’d even go so far to argue that a developmental disability enriches lives, matures souls, and deepens love.)
So where does that leave us?
Cory and I have one normal embryo. The lab thinks it’s a pretty darn good embryo too. For those fertility nerds out there, our embryo is rated a 5BB, graded based on morphology (i.e., shape/form). The first number tells the stage of development on a 1-6 scale (higher is better). Ours is rated at a 5, which means it is in the process of hatching out of its shell (pretty sure it’s not called the “shell,” lol), but it’s not completely hatched. Then comes the letters on an A-B-C scale. The first letter is the grade for the inner cell mass (IM) quality. These are the cells that will turn into the baby. Ours got a B here (a bummer for this past 4.0+ student…hee hee). The second letter grade is for the Trophectoderm quality, the cells that will turn into the placenta. Our got a B here too. This is what our embryologist had to say about our embryo (BTW, I record every conversation I have with the embryology lab):
“Good looking embryos. Didn’t quite get the A grade. But that’s okay. Only 10% of embryos we grade are going to get that A grade. We’re very picky. We like them to look almost textbook perfect to get an A. So both of yours still look very nice. And based on your age, typically that’s the biggest driving force for the genetics, and so typically with patients younger than 35, we see about 65% of embryos come back normal. So out of the two, we should have a really good chance to get one of these two to transfer for you.”
We have one genetically normal “hatching blastocyst.” So now what?
According to my doctor, women with unicornuate uteruses have higher miscarriage rates than women with normal uteruses. Wikipedia informed me that for women with normal uteruses, “a 2012 review found the risk of miscarriage between 5 and 20 weeks from 11% to 22%.” For women with unicornuate uteruses, that number jumps to 37% (according to my RE and his fancy data).
“If I have nearly a 40% chance of miscarrying this one embryo, and if my eggs are declining rapidly by the day, then what should we do?” I’ve asked myself over and over and over. We’ve played out a thousand scenarios in our heads:
Scenario 1: We transfer our one embryo, I get pregnant, and we give birth to a healthy baby approximately one year from now. Yay! We have a baby! If we want more children (which we do), then it will be too late to have any more biological children because my egg reserve is so shitty and all of my eggs will have declined in quality to a point at which they are no longer workable. We’ll have to move directly to adoption (and its $25,000 price tag. Just being real about it, folks).
Scenario 2: We transfer our one embryo, and I miscarry. Then it’s February(ish) 2019, and we still have to do another IVF round but only this time we’ve lost time and my eggs are even older (and crappier) than before.
Scenario 3: We wait to transfer the one embryo we have, and we first do another IVF cycle. We get a couple more genetically normal embryos. Oh happy day! We transfer one back into me, we get pregnant, have a healthy baby, and still have more embryos to use later.
Scenario 4: We wait to transfer the one embryo we have, and we first do another IVF cycle. We don’t get any more normal embryos. Bummer. So we go ahead and we transfer the one we have, and (hopefully), we get pregnant, etc…
(Can you tell that I’m leaning heavily into the facts right now? Oh coping mechanisms…)
After all of that mental spinning, Cory and I decided to do another round of IVF. We want to try to get at least one more viable embryo. This means that in a couple months, right around the holidays, we’re in for another round of injections…another egg retrieval surgery…another huge price tag…and another loan. If we don’t try to retrieve my eggs now, it might be too late to retrieve them in the future. I couldn’t live with that. So that’s what we’re going to do.
So tonight, I’m going to do what I do best in times like these: research and learn and lean into the facts. I’ve started reading It Starts with the Egg by Rebecca Fett to see if there’s anything else I can do to increase my egg quality before we start this next round (spoiler alert: I’m doing most of it already). After reading, then I’ll do what I know needs to come next: sit and be still and absorb every feeling.
Cory and I have survived through yet another chapter in this baby-making story. We’ve amazingly made it through numerous work days…we’ve kept the house clean enough…we’ve kept the fridge stocked (sometimes too stocked)…and most importantly, we’ve maintained our sanity and joy (most days). That’s all we can do.
Now, before I sign off for the evening, I have a couple questions for you:
1) What’s your Myers-Briggs personality profile? I’d love to know! It tells me a TON about a person. If you don’t know yours, or if it’s been forever since you’ve taken a test, take this one below and leave me a comment with your results!
2) How do you process hard stuff? Do you feel the feels, or do you lean on the facts?
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Follow the Unicorn Mission!
Just for fun…here are some pictures of Cory and I taking a break from this IVF stress to celebrate our 1-year wedding anniversary!