By Dr. Annie Brewster
In April, Sue Levy of Brookline shared her story of living with Lymphangioleiomyomatosis (LAM), a rare, progressive and potentially fatal lung disease. Now, in the audio file above, she shares her story of navigating infertility, a journey that started years before her LAM diagnosis but ultimately was informed by it.
Sue underwent six unsuccessful cycles of IVF before she and her husband decided to explore alternative ways to have children. They initially pursued domestic adoption but ultimately decided on egg donor and gestational carrier.
Eleven percent of American women of child-bearing age have a difficult time getting pregnant or carrying a pregnancy to term. While assisted reproductive technology is used much more commonly today than it once was, the term “infertile” is still fraught with negative connotations, especially for women. Dealing with infertility can bring up feelings of shame, failure and loss.
Today, Sue can honestly say that her inability to get pregnant was a blessing, in part because her lung condition is estrogen-responsive and can worsen in pregnancy, but mostly because she cannot imagine having any other children than the two young daughters she has now.
The first pass was just trying to conceive on our own, and it not working, and getting involved in some reproductive health. And we ended up doing six rounds of IVF. And IVF is not for the faint of heart — injections, pumping yourself full of medications. I was very responsive to hormones and the moods — and trying to keep a full-time job and keep going with everything…
I fundamentally believed in the science and I thought, ‘This time it’s going to work.’ And you also have to figure out, how do you keep yourself safe in case it doesn’t? How do you deal with that crushing blow of, ‘They’ve implanted, I’ve seen the embryo on the screen, I’ve watched them put it inside of me, it’s got a 10 rating, it’s awesome, we’re in’ — to then, two weeks later, checking every time you go to the bathroom: ‘Am I getting my period? Am I not? Am I getting my period?’ And then saying, ‘Oh my god, it didn’t work.’
After six rounds of it, you can imagine you would just cry. And I remember saying to my husband, ‘When are we going to know when to stop?
At what point do you say this path won’t work? And I feel like if I could just know that, and know why, and have a definitive answer, we could know when to move in a different direction And so when you’ve got those years of infertility, you’ve got those failed IVF cycles piling up and puling up and puling up, over time you get comfortable with this concept of: Well, what is our goal? Is our goal for me to genetically see myself or my husband in a child? What part of reproducing is the piece you’re so connected to? And for us, over time, we got really comfortable with, ‘We just want to have children. And we’re not sure how it happens and let’s figure this out.’
There was a little part of me that thought, ‘Am I going to feel connected to my child? Because I’m biologically not in the mix at all. It’s like I’m not the egg and I’m not the environment the egg grows in.’ And my answer, definitively, is: My girls are my girls, and I love them so much and I’m so connected to them and I couldn’t imagine any other children except the two amazing crazy bunnies who are ours.
Our whole experience — every time, along the way, it’s about letting go of how you think something should be and saying, ‘I’m just going to jump in with both feet and embrace what it is right now, and stay open to it changing and evolving and see where it goes.’ The most amazing things happen and our journey was absolutely beautiful, and how our girls came to us, and the births and everything else was awesome. Does that mean it wasn’t hard? No. Does that mean there weren’t things that weren’t really crazy and if you’d said, ‘Can you survive them, can you navigate them?’ I would have said no. But we do and it’s amazing.
Dr. Annie Brewster, author and audio producer, is a Boston internist and founder of Health Story Collaborative, a non-profit organization dedicated to harnessing the healing power of stories. You can hear and read more of her stories here and here, as part of our Listening To Patients series.