Welcome to the November addition of Squawk Box. Want to contribute yours? I want you to! Submit here. Today’s content is an intense article that almost wound up in October for PILA. That said beware triggers for pregnancy loss and difficult birth.
Infertility is such a fucking peach, isn’t it? And it’s the gift that keeps on giving. Our author today, who wishes to remain anonymous, struggled to get her first baby and then when it came time to try again was in for a longer ride than she had bargained for. I’ll let her tell her story…
The picture is one actually sent in with the piece! Sometimes the universe has such a cruel sense of humour.
Written by: Anonymous
Published with the author’s permission.
My infertility journey started on October 10, 2010 – my wedding day. I didn’t know it then, of course. That was the first time my husband and I had unprotected sex. I spent my honeymoon happily fantasizing about our baby-to-be. As the months slipped by without a positive test, I began to get nervous. My parents had dealt with infertility in the 1970’s and I was wary of it happening to me. After a year, we got really serious about trying. We tried it all; timed intercourse, charting my temperature, cervical mucus, ovulation kits, the whole nine yards. We did that for another year, while I slowly tried to keep from going insane every time my period started. Finally, after two years of trying, we got a referral for a local fertility clinic.
I remember being so incredibly anxious at that first visit. My husband wasn’t able to be there because of work travel so it was just me and I had so many questions. The doctor was very reassuring and took his time to answer all my questions while I frantically scribbled notes and tried to remember it all to relate to my husband. We started with the basic testing and then progressed to the more invasive tests, most of which weren’t covered by insurance. After all that, we came back with our diagnosis: unexplained infertility. Well, fuck. That was incredibly unhelpful. The only things they ever found was a vitamin D deficiency for me (I live in Oregon so not surprising) and that my husband’s sperm were “slightly sticky” but not so much that it would have a large impact on our ability to get pregnant.
We started with IUIs – four rounds, each one more devastating than the last because it was one step closer to the biggie – IVF. Clomid made me feel insane. I had episodes of anger (mainly while I was driving) that scared me because they were so extreme from how I normally felt. I grieved hard after the final IUI, knowing IVF was next. This wasn’t a simple procedure like the IUIs and that scared me. I think I knew that it was going to happen when I saw my Words with Friends board one day. The letters literally spelled out INVITRO. (The picture above? Yes, that’s an actual screenshot of my phone!)
IVF went as well as could be expected. Stimulation, retrieval and transfer were all pretty seamless. We were incredibly lucky in that we got fifteen eggs, all of which fertilized (with the help of ICSI – sticky sperm, remember?) and all of which continued to grow except four. So if you’re doing the math, we now had eleven embryos. We put in two, crossed our fingers and hoped for the best. Ten days later (almost three years since we started trying) a positive pregnancy test confirmed that we were on our way to parenthood.
All of this sounds simple. Clinical. Emotionless. At the time, it was agony. I knew no one else going through this and I felt broken. Incomplete. Like the one thing that my body was designed for, I couldn’t do. While I had a pretty good support system, there were times that were rough. Like when I told a friend we were having troubles and in the same conversation, she told me she was pregnant. The look on my best friend’s face when I said that I needed to talk to her and watching her face fall when she realized not only was I not pregnant, that it wasn’t happening and that we were going to have to go through treatment to achieve what she did easily and quickly.
With my pregnancy, the infertility started to fade into the background as we prepared for this new life. I felt reenergized, ready to tackle this new part of life. My pregnancy was fairly normal, with the exception of several migraines in my second trimester.
It stayed that way until my eighth month when I noticed that my baby was moving less than normal. He was an active baby and it was noticeable. This started on Thursday and by Sunday, I was really worried. We went into Labor and Delivery and they monitored us. Technically we passed the tests but the doctor on duty didn’t feel comfortable that everything was okay. She sent us home but told me to come in the next day for a more thorough scan when the office was open. The doctor on duty on Monday admitted me because she again didn’t feel that everything was okay and by that evening, my son had been born via emergency C-section, four weeks early. My midwife later told me he was the whitest baby she’d ever seen. It turns out he had been suffering from something called Fetal-Maternal Hemorrhage (FMH), a rare condition where the barrier that keeps the blood supply of the baby and the mother separate had failed and he was slowly leaking his blood supply into mine. He was bleeding to death inside me. It was a small enough leak that his body was able to keep up and he was able to make just enough blood to keep his body from shutting down. The doctor that delivered him later told me that he more than bled out his entire blood supply. He spent a week in the NICU and had two blood transfusions but is now a healthy and happy 2.5 year old. He’s my miracle, twice over.
When he was about a year old, I contacted the doctor who had delivered him because she had said that if I wanted to get pregnant again, I should speak with a Neonatologist to fully understand the risk that I might have in being pregnant again, if the FMH could potentially reoccur. Fortunately, it’s unlikely to happen but in talking to my OB and learning more about FMH (I’d googled right after he was born but there was nothing out there really), I learned through a Facebook group, that many, many babies don’t survive and if they do, they often have pretty severe complications (seizures, cerebral palsy, massive global developmental delays, etc.) I had initially been thinking to try again fairly soon but this put me into a bit of tail spin. I didn’t fully realize until then how lucky we’d been. I was terrified to get pregnant again so fertility treatments went on the back burner for another several months.
In January of this year, we did a frozen embryo transfer with one embryo, leaving us eight. After weeks of shots, I again was pregnant. Terrified and elated, we started planning again. Except I spotted. A lot. I had spotted with my son early on but this was more and more often. At 6 weeks, we did an ultrasound and saw the heartbeat of our little blueberry. We started thinking names and furniture. We told a few family members. Then on St. Patrick’s Day at 9 weeks, I went in for my final ultrasound before being turned over to my OB. And there was no heartbeat. Given the size, it’s likely the embryo stopped growing at about 7 weeks. For me, time stopped. I was FURIOUS! I couldn’t get out of the clinic fast enough. I don’t know that I’ve ever felt so angry and heartbroken in my life. I had a D&C five days later and I can categorically say that was one of the worst experiences I’ve ever had.
We needed time to heal from this, emotionally and for me, physically. We decided to take the summer off before trying again. I made an appointment at the end of August for our next consultation. At this consultation, we learned that we could do something that we had opted out of during the retrieval – genetic testing. It had been so cost prohibitive ($5K+ on top of the $16K for the IVF) that we had decided against it and it wasn’t offered to us with our first frozen embryo transfer cycle. The doctor explained that since we had so many embryos (eight), that he felt comfortable with trying to do this since it basically involved thawing, biopsy-ing and refreezing the embryos which statistically adds to our chances of losing at least one, if not more. There aren’t concerns around freezing the embryos twice as they have safely done it many times and have had healthy babies born as a result. So we’re moving ahead with that as well as genetic testing done on myself and my husband for genetic diseases so they can test the embryos further, if needed. We had initially planned for a transfer around mid-November but due to the testing and timing of some other things (my parent’s 50th wedding anniversary party, which I am planning from 1200 miles away and fertility benefits offered through my company starting in 2017), we’ve opted to push it into early 2017. Which is crazy because it will likely fall around one year from the last one. And this is likely our final time. Emotionally, physically and financially (all combined with all three cycles and the IUIs – we’re at about $40K), we’re spent. My son is amazing and if he is my only baby, then I will find a way to be okay with that.
Here’s the thing: infertility is cruel. In so many ways. And over and over again. When they say that it feels the equivalent of a cancer diagnosis, I believe it. At least cancer is universally recognized as being a really horrible thing. But infertility…people can be so blasé about it. And hurtful and dismissive, intentionally and unintentionally.
Some days I think I can be okay with “just” my son and then a friend announces a pregnancy and I’m right back there, grieving for all the things that I will never have, that some people take for granted and that they do for FREE!! I find myself crying on my kitchen floor because of a webcast about a trans man who achieved pregnancy only two months after discontinuing hormone therapy. I find myself furious at the world where a friend who never wanted kids suddenly changes her mind and finds herself pregnant almost immediately and another friend who was done having kids but gets pregnant while using IUD for birth control. I find myself dreading sex with my husband because it will inevitably lead to a two week wait where I make myself crazy, imagining finding myself miraculously pregnant only to be crushed when pregnancy tests come back negative and my period starts, despite all the physical signs that “convinced” me that I was finally pregnant this time (hope springs eternal, I guess). I feel hateful every time someone asks me when we are going to have the next one (none of your business, fuck you very much!)
This second time hurts in a way the first one didn’t. I don’t have the same support system as I did before. I don’t have the same work environment with a supportive and fully understanding boss. I have a demanding toddler and a household to run. I feel well and truly alone in a way that I didn’t experience the first time around. I know loss, pregnancy and birth trauma in a different way than I did before. The veil has been lifted off those things and the shine and excitement of pregnancy and birth feel long lost. It feels like a wound that is only going to get deeper and more permanent.
This is a twisted and mean merry-go-round. I just hope this last time around that I can get off and start to heal that wound, whether I have a baby in my arms or not.