We came across Niki Schaefer's story in relation to a story about an embryo thaw at a fertility clinic that made the news a little while ago. Niki and her family made the decision to donate their remaining embryos after this tragedy. She shared her story on Facebook, and her generosity resulted in a number of other families doing the same (you can read more about this here: https://www.washingtonpost.com/…/this-woman-donated-her-e…/…).
We wondered, after reading her story and being moved by her compassion for other families experiencing infertility, what her own infertility story was, and she was kind enough to share it with us!
1) What is your personal experience with infertility/miscarriage?
I started trying to get pregnant shortly after I got married to my husband Brian in August 2007. I went off birth control pills but never got my period, but pregnancy tests repeatedly came back negative. Impatient and motivated by a nagging feeling that something was off, I went to see a fertility specialist in early 2008. He diagnosed me with polycystic ovarian syndrome (PCOS) and said that I would need fertility treatments in order to get pregnant given the severity of my symptoms. I did not know I had PCOS until that point. I think I probably had symptoms as a teenager but they were then masked by the birth control pills I had been taking for over a decade.
We tried 5 rounds of intrauiterine insemination (IUI) with no success. At that point, the doctor said that if we were willing to pay the money, our chances of success would be much greater with in vitro fertilization (IVF). So, we decided to do that. My first round of IVF was quite difficult. I had a hard time metabolizing the fertility drugs. Although I have PCOS, I am an atypical PCOS patient because I am small (5’3 and at the time about 112 lbs) and my body had a very strong reaction to the variety of medications you take to stimulate ovulation. I ended up with ovarian hyperstimulation and my first round of IVF was cancelled. After I recovered, we immediately tried again. This time they did a slightly better job dosing the medication, but it was still a rough cycle. We had 2 viable embryos from that cycle, both of which the doctors said were not very good looking. But we were lucky enough that 1 turned into my son Noah. My crappy embryo became a beautiful, intelligent, sweet boy born April 22, 2009.
Right around Noah’s first birthday, we decided to start trying for our 2nd child, unsure of how long it would take us. We skipped straight to IVF this time, and I was under the naïve impression that when you did a full cycle of IVF, you would get pregnant. I learned the hard way that this is not true for many people. They managed my drugs incredibly well this round and we got 9 beautiful embryos. In fact our embryos were allegedly so fabulous looking, that they convinced me to only use 1 to decrease the likelihood of multiples. That 1 did not turn into a baby, but we were lucky enough to have 8 more in the freezer. As soon as we could, we tried again, this time with 2 frozen embryos, but were unsuccessful that time too. I mustered up the emotional and physical strength to try again shortly thereafter, thinking I would take a break if this one didn’t work because I was so down and felt like I wasn’t being a good mom to Noah. I was also having a hard time managing my full time career as a trial lawyer at a large law firm with all of the appointments and emotional roller coasters involved in the IVF process. We tried 2 more frozen embryos and one became my daughter Lane on May 23, 2011.
2) How has it made your life worse? How has it made your life better?
It has only made my life better. I know I can only say that because it eventually worked for me, and there are so many heartbreaking stories of that not being the case for other families, so I hope saying that doesn’t come across as insensitive. But, it gave me an empathy I never would’ve otherwise had and taught me how to persevere through physically and emotionally draining times. I wouldn’t have the children I have without IVF, and there is something about that which feels meant to be. It also inspired me to become an infertility advocate of sorts. Talking about my struggles was therapeutic to me, and I found that it encouraged others to share their own experiences with infertility about which they may never have spoken. It can be so lonely and isolating—I have made it my personal mission to be vocal and visible with my own experiences to encourage other women not to hide their own. I’ve also gotten deeply involved in fundraising for families who need fertility treatments but can’t afford them through my membership on the board of directors of a charity called UH Partnership for Families which was started by my doctor, James Goldfarb. I joined the board after Noah was born in 2009. Last year, I chaired a fundraiser that raised just over $500,000 for the cause. I have gotten to know many of the beneficiaries personally and it has been one of the more rewarding experiences of my adult life.
3) When & how did you realize that you were going to be able to carry on after infertility/miscarriage?
What always made me feel better after a failed pregnancy attempt was trying again. And what always amazed me was that even when I thought hope was lost, it would come back when I tried again. I think the mind is incredibly resilient in that way.
4) What have you learned through this experience?
You can’t deal with infertility alone. You need the support of friends and family, although even the people who support you will sometimes say really stupid things that may make you angry. But you can’t let anger or shame or insecurity stand in the way of letting people who love you help you through in whatever way they can. You also need to advocate for yourself. If something feels wrong, you must say something. No one knows your body better than you do and no one wants to have that baby more than you do.
5) How do you feel about your experience with infertility on your good days?
Infertility is what made the kids that I have today. I wouldn’t have it any other way. When I was at my lowest lows, my mom used to say to me “the baby you always wanted will be the baby that you get.” It was hard to imagine that during my failed pregnancy attempts, but now, looking back, that’s exactly what happened. Each and every one of my failed attempts helped make the path to the children I have today.
6) In what ways has your experience with infertility/miscarriage changed you as a person?
I am a more kind and empathetic person and I found a cause that I care deeply about where I can make a real difference in peoples’ lives.
7) 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?
The worst thing that people could say to me when I was trying to get pregnant was that if I just relaxed and stopped thinking about it, it would happen. First of all, that’s not true. Second of all, it’s not possible to relax or stop thinking about it when you’re in the midst of battling infertility. That’s part of the nightmare of the struggle. It’s all you can think about. And if you could stop thinking about it, you certainly would. The best thing people can do is just give you permission to obsess and emote as opposed to telling you to stop.
8) Tell us about you. What are your hobbies/passions/pursuits?
I am a lawyer for Eaton Corporation, a publicly traded company that is headquartered in Ireland but has a large corporate office in Cleveland. I love being a lawyer and I am very dedicated to my career and ascending the corporate ladder as a working mom. In my free time, I love to snowboard, and I also have quite the jewelry/accessory/clothing habit—I’ve always been very into fashion which appears to have rubbed off on my daughter. I also fancy myself a foodie and have a true love of great food and wine (and other cocktails, for that matter). I am also an active member of the board of UH Partnership for Families, which I discussed earlier, and the Gathering Place, which is an organization that offers a wide variety of free programs and services addressing the emotional, physical, spiritual and social needs of individuals and families coping with the impact of cancer.
On donating her family's remaining embryos:
It was really a confluence of events that led us to a “how could we not do this” place. First, we had 4 remaining embryos from our attempts at conceiving Lane. We knew we didn’t want more children, and that we wanted to use those embryos for good, but as I said in my Facebook post, we thought we’d donate them to research because it was honestly hard to wrap our minds around the possibility of Lane and Noah’s formerly frozen siblings walking around this earth and not knowing them. When the cryo tank malfunction occurred at the UH Fertility Center, we revisited that line of thinking. We know the doctors and staff at that Center so well, in part because many used to work at the clinic where we went to conceive our children, but also through our active involvement in Partnership for Families. We also knew a lot of the affected patients. And, we were in a position to help. Those factors made what had previously been a difficult decision incredibly easy. And we were thankful that our indecision on what to do with our embryos in the years prior left us in a place where we could help in a tangible way.