Ten years ago, I was fresh out of college when my brother Jack died and completely turned my life upside down. Jack was born with a rare genetic condition known as Alport syndrome with mental retardation, midface hypoplasia, elliptocytosis (AMME), that affects the way the different systems in the body work together, Jack’s condition was characterized by progressive kidney disease, intellectual disabilities, hearing loss, and eye abnormalities.
After a relatively healthy existence, his kidneys gave out. He spent five months in the hospital and he eventually passed away due to complications from kidney failure. He was only 20 years old.
After Jack died, my parents began testing my older brother Russell’s kidneys — who was also born with AMME — more frequently. A little over a year after Jack’s death, they discovered he needed a kidney transplant. My dad heroically stepped up and donated one of his, saving the life of the only son he had left.
When I was younger, I had genetic testing done confirming that, like my mom, I was a carrier of AMME. It’s an X-linked disorder, which means a healthy person like me has a high likelihood of transmitting it to a future child. In other words, if I decide to have children naturally, there is an extremely high chance they would be born with the condition. I was only in elementary school when we received the results, so the implications of that diagnosis didn’t cross my mind until recently.
When I started dating my now-husband a year after Jack’s passing, I knew my genetic condition was a subject I’d have to broach with him. I’ll admit, I was scared to tell him — not because I didn’t think he’d take it well, but because there’s no casual or easy way to tell someone you love that having children naturally likely wouldn’t be a possibility.
But my fear was unfounded, because he quickly agreed that some day, when we were ready to have kids, we’d do IVF so we could genetically test our embryos and ensure our child didn’t meet the same fate as my brother. I know I’d be signing up for endless doctor visits, invasive exams, and daily shots that would make me look and feel six months pregnant (even though I’d be far from it). I know our fertility journey will be a long and difficult one. But I also know that despite those roadblocks, it will all be worth it if it increases our chances of having a healthy child.
However, I was not expecting yet another major roadblock on our path to parenthood. IVF being the latest focus in the war on reproductive rights complicates an already emotionally, physically, and financially draining journey. Every time a shot is taken at IVF like nationwide fertility protections failing in congress, religious groups publicly denouncing its use, or fertility clinics halting treatments for people who are desperate to have a family of their own — I worry our chance of having a family is in jeopardy.
I run through the same rolodex of anxiety-ridden questions each time I see something in the news: How will this affect our plan to freeze our embryos this year? What will happen to our frozen embryos if another new law is passed? Will my fertility clinic have to stop treatments in the middle of a cycle down the line? How will this affect the cost of treatment? Will it eventually become so difficult to navigate IVF that it will affect my want for children entirely? We’re doing everything in our power to ensure we don’t have to suffer through the trauma of losing a child as my parents did. Government restrictions will only make things more difficult.
I knew about my genetic condition early on, thanks to my parents’ decision to do genetic testing on me when I was young. Unfortunately, genetic testing isn’t accessible for everyone. It’s expensive, not always covered by insurance, and not always available in more rural areas of the country. However, some organizations like UMFD and AFTD offer free genetic testing opportunities for those specific conditions. I highly encourage anyone who has a genetic condition or a family member with one to advocate for yourself. Proactively reach out to your doctor or a fertility specialist for more information about how it could impact the health of your future children. Doing so sooner rather than later — even if you’re not planning on becoming a parent for many years — can help inform your future path to parenthood. This is especially important in this given moment, when the future of reproductive technology is so uncertain.
My husband and I are planning to begin our IVF journey and freeze our embryos this year. While I’m so grateful to live in a time with advanced genetic testing and reproductive technology, I’m genuinely fearful that the government regulation of reproductive health will make this emotionally, physically, financially, and mentally exhausting journey even more arduous. It’s my biggest hope to one day be able to hold my healthy baby in my arms, and be able to thank IVF for showing me that something beautiful can come from something tragic.
