Lindsey Boone used to joke that she wanted to have a baseball team when she got married. She always thought she would become a mom and have a big family. But for Boone and her husband, having a baby proved nearly impossible. And even though infertility affects about 15 percent of American couples, it is often something kept private, a monthly heartbreak suffered in silence.
“My husband is one of ten kids; I'm one of five,” said Boone. “My husband does have a sibling that has had infertility, but they didn't talk about it. They weren't open either. So for us, it was extremely isolating. And we were very ashamed; We were very embarrassed. So we kept it completely private. I even started having surgeries. They did a major surgery for my endometriosis and found out that I had stage four, and we didn't tell people. For five years it was a very lonely journey that we went on.”
It was hard for the Boones to watch friends and relatives close in age go on to the next stage of their lives. The couple felt left behind. After their first year of trying to get pregnant, they sought help from a fertility specialist. The Boones graduated from the least invasive interventions, such as medications like Clomid, to other assisted reproductive therapies including rounds of IUI, or artificial insemination, and surgeries for her endometriosis. And with every new treatment, there was failure.
“It's like going through a death every month,” she said. “You have all this hope. You start to picture what your future is going to be like and then you have a total loss and you have to pick yourself back up emotionally, physically and sometimes financially if you've done a treatment and it failed. It's very hard.
When somebody passes away you have all these people that come to you with memories and thoughts, but when you have infertility or miscarriage or infant loss, people don't have memories to share. So you're just dealing with this grief by yourself and it's very lonely. When you have diseases in life like cancer, you have people bring you cards and letters and casseroles. But when you go through infertility, nobody like shows up at your door with a casserole dish.”
Camille Van Wagoner Hawkins could relate. Three years ago she partnered with four other women to form the Utah Infertility Resource Center (UIRC) because there wasn't a place where people struggling with infertility could go for information and support.
“It's kind of like this feeling of being lost in a foreign country because you're struggling with infertility, and, in our community, there are families and babies everywhere,” she said. “And so you just don't know how to find your way because you thought you would just have a baby, like, this is what you do. When that doesn't happen for so many people it's completely foreign and completely confusing and isolating and people feel very lost.”
That's how Van Wagoner Hawkins felt after she underwent three unsuccessful IUI treatments and two in vitro fertilization cycles, where one ended in miscarriage, another in having zero embryos survive the process.
“We were then devastated even more because we had finally gotten to the point of pregnancy, and we had spent almost $20,000 on a cycle—that doesn't include all of the other cycles and procedures—and we had received money from family members to help us do this, worked and sacrificed for, ate beans and rice so that we could save for, and watching it go down the drain. In the toilet actually.”
Van Wagoner Hawkins is a licensed clinical social worker and she knew she needed additional support to cope. She needed to talk to someone, a therapist who specialized in infertility, or an in-person support group. Both were hard to find. So she reached out to the leader of an infertility Facebook group she was part of and asked if she would want to hold an in-person peer support group with her. They planted fliers in local clinics and libraries advertising the group. The first session was held in March 2014 in Van Wagoner Hawkins' living room in Salt Lake City. People came from Utah County, Cache County and Wyoming.
“Essentially the most powerful thing with the support group, people had other people who knew what they were going through,” she said. “And it's not necessarily to say, 'Oh I know what you're going through, I know exactly what you're going through. This is how it is.' But it's that 'Hey, our stories might not have the exact same details, but I really wanted to be a mom, and you wanted to be a mom, and we can't get there. And that really sucks. So let's support one another. And that is where the beauty comes from.”
Van Wagoner Hawkins and her husband have since adopted two little girls. And she now directs the Utah Infertility Resource Center, a nonprofit she conceived during their difficult journey to parenthood.
The organization provides educational and mental health counseling, workshops, volunteer-run support groups for men and women, and an advocacy arm to push for legislative reforms. Lindsey Boone met Van Wagoner Hawkins at a charity 5k race and got involved with the center. Now a mother herself through IVF, she has come out to family and friends about her infertility and leads the Cache County support group.
“It doesn't need to be so lonely and isolating like it's been in the past,” she said. “If I would have had the support that I have now back then, it would have been a lot easier. We are going through secondary infertility and going through all of this again, but I feel like I am getting through this so much better because there are things out there.”
Because treating infertility is not cheap, and in most cases, it's not covered by health insurance either, Boone has taught a fundraising class for people trying to conceive on how to pay for adoption or infertility treatments. Costs range clinic to clinic, but a round of IVF is often upwards of $10,000, Boone says. Tack on unexpected procedures and people could be set back almost year's salary. And there's no guarantee it will work.
“It didn't just want to teach things that we had done,” Boone said. “I wanted to ask 'What are people in Utah doing to earn this money?' And more often than not, people were selling their homes and living n parents' basements. And it was so heartbreaking to me that in order for people to have a child, they had to sell their home. Every time I would get told that it would just tear me apart that that's what it's coming down to just so they can afford IVF, and I'm like there's something really wrong with this.”
That's why on Valentine's Day when Boone learned of pending legislation to start a 3-year pilot program for PEHP, the health insurance for state employees, to pay for up to $4,000 for infertility treatments or adoption costs, she drove to Salt Lake with her son to testify before legislators. Because Utah, like many states, does not have a mandate for insurance companies to cover infertility treatments. Boone hopes by sharing her story it will influence requirements.
“Somebody asked me why I went through all that to down there that day—take off work—and I said, 'I guarantee you that we will have nieces and nephews or great nieces and nephews that go through infertility. And I hope that by us taking these steps that one day we will be able to do for them what I wish somebody could have done for us. I'm hoping that one-day insurance companies will pay for infertility treatments, and one day we will have a family member that can be like my relative helped with this.”
That's Van Wagoner Hawkins' long-term goal too. She will continue to push for reforms and hold her kids tight.
“These children did not come to us easily,” she said. “We had to really, really really hard for them. Years and years of failure. Of not getting chosen or not having a treatment work out. The joy in general of holding a baby is wonderful. But to hold a baby and to think of how hard I worked, my husband worked, or other people have worked for this moment, I think is really really rewarding and helps to kind of remind me and other people just how precious life really is.”
The UPR Original Series "Crossing Borders" is a yearlong storytelling project between UPR and the USU Office of Global Engagement - providing services for international students and scholars; and facilitating study abroad opportunities for students and faculty. Details found here.
Music heard in this story:
Cellophane Sam - The Turnaround Road
Podington Bear - Wavy Glass