Infertility is a common problem in the United States. Out of 100 couples, about 12 or 13 have trouble conceiving. About 10 percent of women in the U.S. have difficulty becoming pregnant or staying pregnant, according to the Centers for Disease Control and Prevention. Infertility isn’t a new problem, but what seems new is that a generation ago, women tended to keep silent about their struggles with infertility. Perhaps they felt more private, or even experienced unnecessary shame. Today, young women tend to feel more secure about their bodies and more comfortable sharing their stories either with friends or on social media.
What makes these Millennial (born in the 1980s) or Gen Z (born in the mid- to late 1990s) women different from their mothers or grandmothers when it comes to their openness about infertility? We spoke to two friends from Teaneck, who shared their infertility stories on Facebook. Samantha (“Sam”) Locke works in healthcare IT for a company called ELLKAY. She has one-year-old twins, Jack and Emma. Abbie Sophia Adamit worked as a social worker and now is a photographer. She and her husband have two children, Eliav, age 3, and 6-month-old Halleli. Here are their stories.
Please share your pre-pregnancy story.
Samantha Locke: When my husband and I got married in 2015, we were both of the mindset that whatever happens happens. We chose to forgo birth control as we did not want to interfere with fate. After two years, we started to worry. In October 2017, we made an appointment at the Fertility Institute of New Jersey & New York. After three failed rounds of IUI (intrauterine insemination), we made the decision to move forward with IVF (in vitro fertilization). In February 2018, we did the egg retrieval for IVF. After fertilization and genetic testing, our embryo transfer was scheduled for April 18, 2018. We put two embryos in hoping at least one would stick. On November 18, 2018, we were blessed with our two little miracles, Jack and Emma.
Abbie Sophia Adamit: I stopped using birth control one year after we got married. After two years, I was still not pregnant. I decided that I should check in with the doctor just to see if anything was up. They said everything looked okay on both sides, mine and my husbands, after lots of tests, but would try to do IUIs anyway. After four tries, we moved forward with IVF. The first round failed with two fresh eggs. For the second round, two frozen eggs were implanted and one took, giving me my lovely Eliav.
Did you have a similar experience with your second child?
AA: When Eliav was about 15 months, we started to think about a second child. I figured it would take a while so I should start now. Sam and I were actually on the same schedule! I did get pregnant with this round, but at nine weeks I lost the pregnancy. The embryo was slow to grow and the heartbeat sadly disappeared. I miscarried the fetus on my own, by stopping the IVF drugs to stop helping the embryo grow. It was very painful physically. I gave myself a few months off and proceeded to do IVF, again with two embryos. This time I got pregnant, but the human chorionic gonadotropin (HCG) hormone levels were double what they were with Eliav! I knew deep down I was pregnant with twins, which my doctor confirmed. I was so pumped. But I knew that there were still a few more weeks to make sure we were in the clear.
At around 16 weeks, we found out that Baby B had a neural tube defect, misshapen head, skull, and neck. The doctor said that it would most likely die in utero or right after birth. And if it didn’t, it would have a very short painful life and not be able to go to the bathroom on its own or walk. They suggested a “selective reduction,” which is when they terminate one baby. We were lucky that it was early enough that it was still allowed and somewhat safe. But I had to be very careful so that Baby A was still healthy. We were also lucky that they were not identical twins, and that the one that was not healthy was Baby B because Baby A is always the one that blocks the exit and the decomposing fetus sometimes sparks preterm labor. Anyway, after a very complicated pregnancy, one placental abruption and hospitalization, PUPPPS (a chronic rash), and many tears and prayers Halleli was born via C-Section at 39 weeks!
What were you going through emotionally?
SL: We never thought we were going to go through IVF. Even when we started going to the Fertility Institute, we thought we would be put on medication and get pregnant. We never imagined how hard it would be. We were very blessed to have a strong support system during the process, but it was really tough. The countless appointments, time off from work, shots, pills, and procedures took a toll on us emotionally.
AA: With Eliav, my first pregnancy, I told people because by the time we did IVF I had written about how we had a “secret not so secret.” It was great for me to have an emotional support system through that. But I was also scared that it was all too good to be true! With Halleli, I kept thinking how lucky I was that we could do all this, but while I was very emotional I also became very ambivalent about the pregnancy until well into the 30-week mark. It was hard not to think that Baby A (Halleli) would be affected and I wanted to just start all over.
Did any of your friends or family know?
SL: Our parents knew once we started going to the Fertility Institute. We kept them in the loop every step of the way. We only told our siblings and close friends later in the pregnancy. Abbie was a critical part of our journey. She was very open about her own experiences and was a resource for us even before going to the Fertility Institute. She helped guide us and really was our rock during the process. Because of her, we never felt alone or ashamed.
AA: Yes! But only after a few IUIs. And I had Sam, who I could always talk to. I was still selective about telling people but it was so great to have someone I could trust. When I got pregnant with twins, I told Sam and basically no one else (not even my husband at first!) and when I had to terminate I also could rely on Sam for support. Eventually, I would tell people after I processed it myself but it took a while. Sometimes I think I had wished I had told people from the start that I was having twins so I could have more people to mourn and support me. It was very hard to have people saying they were so excited when I was still trying to mourn baby A’s termination.
Why did you decide to share your story on social media?
SL: We shared our story on social media the day our twins were born. Infertility is generally not discussed even though so many people struggle with it. Our journey would not have been the same without Abbie. Her willingness to share her experience helped us tremendously. We wanted to be that source of light for someone else, the same way Abbie was for us.
AA: I felt so confused. Why was it such a secret? Why should it be? Why would someone ask me when I was having kids, and THAT would be okay, but not okay for me to say “we are doing fertility treatment, actually,” so I posted on my friend’s blog about how we were doing IVF and it was shared 400 times or something crazy like that! And for people like us and Sam to feel more supported, it was all worth it. When I had Halleli, I posted about the termination because I felt so lost and I felt that I was given the gift of this experience and pain to be able to help lessen the pain and confusion of others.
What reactions did you receive after you posted?
SL: A lot of people were very surprised that we were going through treatment for so long. We received a lot of positive feedback and praise for sharing our story with the world. After posting, many people reached out to us sharing their own stories or their current struggles with infertility.
AA: Very supportive, mostly! I heard through the grapevine that some people didn’t understand why I would post anything so private. I was just baffled that I felt so ashamed. When I finally shared a whole world of support opened up to me.
How did your spouse feel when you shared your story with the world?
SL: My husband was beyond supportive of sharing our story. He also wanted to do something to remove the taboo surrounding the topic.
AA: Very supportive as well. It can get really touchy when it seems to be “the husband’s problem” and also, because this topic has to do with something intimate and personal it can be scary to share.
How did your parents or extended family react?
SL: It was hard for us to tell our parents. They were very supportive but also very surprised. Our siblings were also very supportive, however, I don’t believe they really understood what we meant when we told them we were struggling with infertility. Because infertility is not openly spoken of, it was all new to them.
AA: All were supportive, of course. At the time it felt like there was no end in sight and sometimes when family tries to say it’s all going to be okay the truth is, we just don’t know.
SL: People are more open today and more willing to share information. I think part of this has to do with the shift in technology (Facebook, Instagram, etc.) and I think part of this is a shift in mindset. There is nothing to be ashamed about and we should all be proud of who we are and all we have been through.
AA: Today there is much more openness, for sure! I think people were ashamed to talk about certain things because they were related to sex.
Do you think this is a positive change?
SL: YES! We can better support each other if we have open communication on the topic. Infertility should not be taboo.
AA: Of course. While it is something so hard to go through, it’s a part of my life now and very normalized. It makes it easier!
How did you feel after sharing your story?
SL: After sharing my story on social media, I felt strong and empowered. Infertility is not something to be ashamed of. My journey to pregnancy and my struggles with infertility have only made me stronger.
AA: I feel proud of my journey and where I have been, and how it keeps on growing, changing and making us stronger.
Did sharing your story help other people? How so?
SL: Yes. After sharing our story on social media, so many people reached out to share their past experiences and current struggles.
AA: After my post, unfortunately many people came to me about their same experiences and that is hard, but it made them feel less alone and slowly helped them process. I am also there as someone people can vent to and know that they can because I have gone through it!