1) What is your personal experience with infertility/miscarriage?
What is my story? When does infertility start -- When does fertility become infertility? Did it start when our first IVF cycle failed? Or when we had our first appointment with the reproductive endocrinologist? Did it start when we began trying naturally to get pregnant? Or was it before that, when we had to delay expanding our family because of other illnesses? Was it the first time my heart constricted as I stood in the baby aisle choosing a present for a friend’s shower? Did it start when, before we were married, my husband-to-be and I planned a future -- half-joking -- which included enough kids to have our own soccer team? Or was it earlier than that -- did fertility become infertility when I was born with “all the eggs I would ever have” as I have so often been reminded on this infertility/fertility path?
Because there is no real beginning and no end in sight quite yet, I’ll begin with the first visit to the fertility clinic. We had already delayed expanding our family due to circumstances beyond our control, so when we had tried naturally for nearly a year with no luck, I was full of hope when we went to the clinic. I hoped they would say “Ah ha -- this is the thing that’s wrong. Let’s fix it and you’ll be pregnant in no time!” That’s what everyone hopes as they walk into the clinic. In reality, they couldn’t find anything wrong. So, we took the normal route -- several months of intrauterine insemination (IUI). This was a stressful time -- early morning clinic appointments, anxious two-week waits, listening to voicemails -- always the same: “The pregnancy test was negative. Come back next week to the clinic.” During this time we also moved and I started a new job. We hadn’t yet told very many people, if any, that this was happening in our life. Why should we? It was going to be but a blip in the grand scheme of things. But, as months rolled past, the stress grew and we knew we had to move on from IUI.
IVF was recommended -- statistically the chances of it working versus IUI were so much greater. So, it didn’t take long for us to decide that this was the right path for us. We would do whatever it took to get a baby in our arms as quickly as possibly. We met with the clinic’s social worker for the mandatory IVF counselling session. She asked standard questions -- how we dealt with stress and how we made decisions. What were our worries and concerns? She had us sign forms and called us the Intended Parents. I remember pausing and commenting at what a beautiful phrase that was. Yes, that’s what we were -- that was our intention. We were doing this seemingly incomprehensible medical procedure because we wanted to be parents. We were so full of hope. I mean, IVF works for everyone, right? There wasn’t any reason to suspect that it wouldn’t work for us -- all the preliminary tests had come back with decent results. Let’s do it!
As I lay on the table, sedating drugs coursing through me and my husband squeezing my hand, a needle pierced through my uterus, a tear rolled down my cheek and I remember thinking I can’t believe this is how we’re going make a baby.
We had good numbers. We had 4 5-day embryos. Later, our doctor would call them “beautiful.” The next step was to wait to find out the results of the genetic testing we had elected to perform. At my age, it was likely that only about 30% of the embryos would be abnormal. We weren’t worried. The results of this would tell us which ones had the best chance in giving us a healthy baby. We left town to visit family.
As we drove through Michigan, my phone rang. I didn’t answer, and soon the voicemail chimed. I listened to the doctor asking if we could come in later that week for an appointment. I knew in my heart that it was bad news. We found an exit somewhere outside of Detroit, pulled behind a warehouse, called her back, and put her on speaker phone. “All of the embryos tested genetically abnormal.” Silence. “What does that mean?” I asked. She said it meant there was nothing to transfer. The embryos were not viable with life. I don’t really remember the rest of the conversation, at some point my husband had to take over as my throat had constricted and I was unable to speak. We hung up and as I tried to get out of the car, my knees buckled. My husband held me and I cried until I could not cry anymore. It was a loss of so much hope. We spent the next week taking turns crying each night as we got into bed.
Eventually, we spoke with our doctor and our social worker and they reassured us that there was no reason to believe that my worst fear was true -- that most likely not all my eggs were bad. They were hopeful that another round of IVF would be more successful. This was likely just a fluke -- bad luck. So, slowly, sparks of hope ignited and we found the strength to think about a second round. This time we were going to pull out all the stops and try an experimental treatment (Augment) that our clinic was pioneering. Add some extra energy to my egg cells and hope they would grow properly. Preliminary results of this procedure were promising -- so far all the women my age who had done it at the clinic were pregnant.
Eight months and one surgery later, we started round two. Again, we allowed ourselves to be hopeful, but cushioned with a bit of cautiousness this time -- we had been burned once. Again, we had 6 “beautiful” embryos. Surely, at least one of those would be normal. But, about two weeks after the egg retrieval, the clinic called. It was the doctor. “All the embryos are abnormal.” Silence. “I don’t know what to say,” was all I could manage. She told me she didn’t know what to say either, but she was sorry. “Take time” she said, “then come see me.” I was at home this time. I sat on the floor until my husband could come and hold me.
This time she was less optimistic about the possibility that I had any good eggs left. It was possible she said, but the only way to know was to try a 3rd round. If the results were the same, then the writing was on the wall.
So, we considered. Is that what we wanted? It was not an easy decision. She also offered up the possibility of trying with donor eggs. Were we ready for that? We technically were still under the “unexplained” diagnosis. So, really, what was wrong? Eventually, we switched clinics for a second opinion. I was diagnosed with stage 2 endometriosis, via laparoscopic surgery, and an arcuate uterus. We went ahead with a 3rd IVF cycle one year later, but entered it more with an attitude of “Well, let’s give it a try, but it’s probably not going to work.”
I went for my ultrasounds and bloodwork. I did my acupuncture and took my supplements. My husband poked me with needles each night for 2 weeks. But, this cycle came crashing down much earlier than the others had. Instead of the hoped-for 4 eggs on retrieval day, we only had 2. One did not fertilize and the other one disintegrated over night. So, that was it. In less than 24 hours the whole cycle was over and we were left with nothing.
It’s a difficult grief to explain. It’s immense sadness for tiny cells and the hope of what they will bring to you. It’s grief that is inescapable and all-consuming.
This time, we had been preparing for the possibility that the cycle wouldn't be successful. It didn’t make the failure any less sad, but it did mean that we were able to pick up the pieces of our hearts a little faster and move on to the next logical step for us: donor eggs. This idea had been percolating for about a year and finally, feeling like we had exhausted all attempts with my eggs, this felt right.
I was having a hard time letting go of the genetic link to a future child, particularly as I had lost my dad during this time. I felt having a genetic link to my child would help me hold on to him in some small way. We approached a relative about donating eggs, but she respectfully declined. We had expected this response, but felt we had to ask so as not to ever regret anything. We then turned to a donor egg bank. We actually found a donor profile relatively quickly which spoke to us and which we connected to. It took us several months to officially take the leap and secure her as our donor. But, once we did, the process moved quickly.
For the first time in a very long time we felt hopeful again. Even my husband, who had remained rather stoic since the initial IVF round, felt hopeful. It was not an easy process, emotionally, to imagine this other woman preparing for an egg retrieval for us. I was overwhelmed with gratitude for her, but also sadness for myself. I was hopeful and nervous. “In all likelihood, this could be the solution you need.” Of course no one guaranteed us a baby at the end of this path, but “solution” is a heavy, weighty word. One that sticks with you. One that offers hope and comfort. This is what our health care providers told us. I was trying desperately to live in the place of possibility. What if it doesn’t work? What if it does? After all this donor could be our solution. We needed fresh, fertile eggs and she had them!
She passed all tests and assessments, she had donated before, so we knew she responded well to treatments. We completed all the paperwork and her cycle began. She had clinic visits, while our life proceeded on. We got the call the day after the retrieval: 11 fertilized embryos! That was amazing. We were so excited. For the first time in ages I cried happy tears. This was hope -- real hope, tangible hope.
By day 3 we had eight embryos still going strong. Such good luck. It was all going well. Until day 6. The nurse called with the final update before the biopsies would be sent for genetic testing. Two. Only two embryos had survived. I was discouraged, sad, already feeling our hope slip away. Everyone says “It just takes one!” And while my head knew this, my heart did not. Two just felt like so few chances. Knowing our good numbers at the beginning of the week, I had allowed my mind to wander down a path of good news and was beginning to feel like maybe having more than one child really was in our future. Nonetheless, we went forward with the PGS testing. We wanted to be sure that when we finally got to transfer we had controlled for as much as we could. We tested these final two and a week later when the clinic called, they only had more bad news for us.
“Unfortunately, they’re both abnormal,” the nurse said. My silence was long. What could I say? This news, the same news we’ve heard before, for the third time on this journey. We just kept hitting this wall. Dazed. Wanting to burst into tears and throw a tantrum. Wanting to curl up and go to sleep. I know this feeling now, it’s numbness. It’s zombie-like. It’s shock. I’ve felt it many times now, more than I care to recall.
This loss has taken a lot out of us and we’re not sure where to go from here. My husband is considering stopping treatments and finding a way to be content with living childfree. I’m not ready to give up being an Intended Parent. So, for now this is where we are. It’s a long story and so far one without an ending.
2) How has it made your life worse? How has it made your life better?
Infertility invades every aspect of my life --from interactions with friends and family, to my relationship with my body, my relationship with my husband, to finances, what I eat and don’t eat, to what I watch on TV, future-planning, work….the list goes on and on. So, I think that’s how it’s made my life worse -- it’s an added layer to everything that I do and think.
How has it made my life better? At this point it’s really hard to see the good. I have made some new friends, whose support I couldn’t have done without, so that is definitely a positive!
3) When & how did you realize that you were going to be able to carry on after infertility/miscarriage?
I think I’m still figuring this out everyday and will continue to, until we resolve our infertility, one way or another.
4) What have you learned through this experience?
I am still learning, as this experience is continuing each day. I think, like many women who have gone through infertility will say, I am learning to have more empathy for others. I feel I am able to sit with others who are hurting and in pain in a way I wasn’t able to before. I am learning that it’s important to acknowledge other people’s pain, even if it’s uncomfortable. It’s hurtful to say the wrong thing, but it’s also hurtful to say nothing at all.
I am also learning about my own resilience and ability to cope with grief and pain. I am learning to advocate for myself and for what I need -- personally, medically, emotionally.
5) What do you hold on to for hope/courage/strength on your bad days?
In the early days at the clinic, I couldn’t imagine lasting another month or year without being a mom, much less 4 ½ years! Each failure, each disappointment, allows me to see my resilience. I remind myself that I have survived this far, when, after the first IVF failure, I did not think I would ever find a way forward.
6) How do you feel about your experience with infertility on your good days?
Even on good days, I don’t look at this experience with kindness or gratefulness. I cannot understand a reason why this has happened to me and my husband. But, I do recognize that it has taught me a lot about myself and my ability to relate to others. It has shown me the compassion and kindness of people close to me who have been great supports to me. As well, this journey has also introduced me to some pretty amazing people who I never would have met if I hadn’t gone through this.
7) In what ways has your experience with infertility/miscarriage changed you as a person?
Before infertility, I loved being around children, babies, and even pregnant women. I was the first person to ask to hold a newborn, I ‘oohed’ and ‘ahhed’ when coworkers brought their babies to work, and I honestly didn’t even mind playing silly games at baby showers. Now, all of those things are so difficult for me that I tend to avoid them, so as to protect myself. As a result, I’ve become more isolated from friends who have kids. As well, I am much more anxious about attending social events because I anticipate the conversation -- either very child-centred and I end up feeling very left out or some iteration of the the dreaded question “Do you have kids?” I hope that one day these wounds will heal, but for now they’re too raw.
8) How have others responded to your infertility situations? Has it impacted your relationships? What are some things you’ve been told that have been helpful/harmful?
I’ve been really lucky. My family has been very supportive and loving, as have the friends who I’ve shared this with. Most people, if they haven’t gone through infertility, don’t really know how to respond, but some of the best support I’ve received has been people just checking in and asking how I’m doing, letting me know they are there and that they care.
Infertility has definitely impacted my relationship with my husband. It’s been a difficult journey for both of us, and has forced us to make decisions we never thought we’d have to make. We have dealt with it differently and have needed different things along the way. Right now we’re focusing on our relationship.
9) Tell us about you. What are your hobbies/passions/pursuits?
I love language. I’m a speech pathologist and really enjoy my job helping others. I also love to read and write. My husband and I enjoy travelling, hiking, exploring nature, and watching wildlife. And, of course, I love my cats!
10) What is your favourite quote?
It may be a bit cliche, but it really is true:
“Be kind, everyone you meet is fighting a hard battle.”
For more of Sarah's journey, please visit her blog : https://chasingthestorkblog.wordpress.com/