It was around the time I stood on the sidewalk of a cracked and broken Uptown New Orleans street that I realized just how delusional I’d been about IVF. Sweat brought on by the late summer humidity mixed with tears as I hugged a receptionist whose name I don’t know and faced the reality I’d gone through an entire egg retrieval with nearly nothing to show for it.
Months earlier, I’d walked recklessly optimistic into the clinic behind me. In my early 30s, happily married and without either of us having any known fertility issues, my husband and I wondered how hard it could be to get pregnant. But then, there I was, sobbing with the realization that the only embryo that’d made it through fertilization undeniably shared my DNA, laced through as it was with the abnormalities that manifested in my polycystic kidney disease (PKD).
That disease, which is the world’s most commonly inherited kidney disorder, was the reason I was there. A slow-moving monster, it causes kidneys to be infiltrated by cysts, which over time stops them from performing their job of filtering waste from your blood. Eventually, people with PKD require dialysis and kidney transplants, and our kids have a 50/50 chance of inheriting it, too.
That is, of course, unless you conceive with in vitro fertilization (IVF) and first opt to diagnose and disregard any embryos with markers of the disease. That process, called preimplantation genetic testing (PGT), ensures you don’t pass along the chaos hidden in your blood.
Doctors have performed PGT since the 1990s, but investigating embryos before they’re sent into a waiting womb has reached superspeed in recent years. There are folks like me who seek to avoid a specific inheritable disease, but many more would-be parents seek “elective IVF” to more generally avoid illness and reach toward desirable traits for their future kids. Not only are the ethics of it all predictably complicated, but the data is, too: Genetic testing is popular amongst IVF procedures, but there’s no tracking for what potential parents are trying to avoid.
That made, for me, an already lonely path even lonelier, as identifying with other IVF parents felt like a stolen form of solidarity. Yes, this is hard, I thought, but surely we didn’t deserve the same grace that others did after landing at IVF clinics following years of trying to build a family. In a way, that loneliness and confusion felt like armor, a shield against the stories of loss and disappointment that fill social media hashtags like #IVFwarrior and #IVFmama, posted alongside piles of needles and, eventually, smiling babies. But my arrogance cracked that armor wide open when I learned nothing was guaranteed. After all, an embryo was ready for me, if only I’d accept it would share the same kidney disease I have. I knew in rejecting its chance to live, I rejected part of myself and my own inevitable future.
But I’m proud that, today, when I watch my 3-year-old daughter running around a playground or laugh at my 3-month-old blowing spit bubbles, I know they at least won’t have to wrestle with kidney disease. There’s not much to be done about the illness, though medical science is trying. A cure feels tantalizingly close enough for my doctor to suggest I might see one in my lifetime, but not close enough to poison the next generation on a bet an antidote will arrive when they need it.
I’m only a few years into parenting and even I can tell you it’s impossible to protect your kids from everything. Years of heartache, waiting, and $60,000 in clinic fees and prescription drugs later, I have my two girls. But they could still come down with other illnesses. Other diseases could lurk in their DNA or a thousand, million other things could go wrong. But ask any parent if they’d pay to avoid a coin flip ruling on whether their kid gets a lifelong diagnosis, and they’d start writing a check. Parents protect. It’s just that simple.
These days, as I lay awake in a darkened house, brought to consciousness by my daughter’s middle-of-the-night hunger cries and kept there by a dull ache in my kidneys, I know it was the right choice for them—and for me.
