The Washington PostDemocracy Dies in Darkness

For me, IVF and other fertility programs can have a darker and less happy side


As a little girl, I never dreamed of motherhood. When I got married at 36, I assumed pregnancy would come easily. A year later it did, although at 18 weeks I experienced a devastating miscarriage. And a second early miscarriage not long after.

About 1 in 4 women experience baby loss; 1 in 8, infertility. As my 40th birthday loomed, I turned to in vitro fertilization, like many women my age with similar loss experiences. According to a 2018 study, 33 percent of Americans have used IVF or another form of assisted reproductive technology (ART) to get pregnant, or know of someone who has. That number is expected to grow.

But beyond the sweet images of healthy newborns used to illustrate IVF services, there’s a darker and less happy side to IVF that some people may not realize. Most significantly, it’s not that easy to have a baby with ART. The truth, I learned, is far more complicated — and painful.

We froze our embryos a decade ago when we weren’t ready to be parents. Here’s what happened next.

I’d never heard of any fertility acronyms often bandied about during this process — such as TWW (a two-week wait to see whether a treatment has worked) or FSH (one of the more important hormones for getting pregnant) — or knew what a blastocyst was. (A blastocyst is an embryo at the day five or six stage, considered viable for genetic testing.) And I assumed my health insurance would cover everything — a costly misconception.

At a recent baptism, the priest exclaimed that babies were life’s happiness and couldn’t be bought. In actuality, a U.S. woman undergoing IVF to have a baby spends an average of more than $12,000, plus the cost of drugs, according to various estimates, just for an attempt to create a life, with no assurance it’ll work.

That amount increases with genetic testing as well as countless extra costs that many people encounter, from biopsies of cells to transportation of frozen embryos. Doing IVF without insurance coverage, or only partial coverage as is often the case, makes an unsuccessful IVF attempt even more upsetting.

“It only takes one” — meaning successful implantation of an embryo — is a mantra that gets repeated throughout any foray into IVF/ART (unless the first try is successful). This might resonate with some people, provide comfort or be irritating — and likely all three at some point.

What’s not communicated very well is that at every stage of the process, the numbers of embryos falls off. For instance, hormone IVF treatments may produce 20 eggs but maybe only half will actually manage to get fertilized with sperm to create an embryo. Out of those, another half will survive to day five, when they are genetically tested. And it’s possible that once tested all of them may be abnormal, and not viable.

Better fertility treatments can mean much older parents. But how does this affect their offspring?

The long-awaited final step of implanting the embryo into the uterus — transferring — sometimes is just as elusive as a baby.

I learned all this the hard way.

In eight months, I’ve done four rounds of IVF. My once flat tummy is soft, at the mercy of people who endlessly pry at it and hormones that induce constant fluctuations. My body is not a temple. I’ve spent almost $50,000 out of pocket, since my health benefits ended after only one round. Four cycles of daily hormone shots for two weeks at a time. Regular blood draws, and ultrasounds, days of anxiously awaiting results, and phone calls.

I got so familiar with the clinic’s ceiling from lying on my back for checkups and procedures that I knew every crack and crevice.

My first round of results were promising, with five embryos retrieved and fertilized. But none made it to the pivotal day five for testing. My second round of IVF yielded two embryos that genetic testing found were both abnormal. The third time was a total bust — five eggs retrieved but zero fertilized. Round four, however, was different: One embryo survived and made it to testing. When a nurse called with results, I sensed a new tone: eagerness. You’ve got a good one, she said. So I will finally, eventually, get my turn.

Yet in the midst of an exciting next step, raw truths remain. It took four grueling tries for one, precious chance. And a potential child frozen and waiting is wonderful, but doesn’t equal a real, healthy baby as I was reminded just recently when the “transfer” of my frozen embryo was unexpectedly delayed for a few months because of a medical procedure I needed.

Any number of obstacles can delay the process. A cycle may be canceled because of the discovery of cysts, fibroids or unbalanced hormone levels. Unsuccessful IVF cycles usually prompt more investigation that can lead to uncovering conditions beneath the surface such as endometriosis — where tissue similar to the uterine lining grows outside the uterus — and scar tissue.

Genetic testing doesn’t guarantee a baby, either. A an embryo that tests normal can still fail to implant. A fresh transfer (one with embryos that aren’t tested or frozen) can also be unsuccessful or result in pregnancy loss. Any of these outcomes is devastating.

But less mentioned are women who don’t make it to that transfer stage, or don’t get a “good” implantable embryo. That’s deeply painful. Doctors learn from each round, but that’s not always comforting to the woman going through the process and facing disappointment.

Another memorable support group quote was: “I feel like an expert in reading ultrasounds.”

Women become knowledgeable about their bodies in ways they never imagined. Learning about things that once seemed foreign. Style takes a back seat to comfort. Favorite accessories become a heating pad or eye mask. Fertility issues can affect confidence, and the reflection in the mirror.

Despite its many challenges, there are ways to navigate the often extreme emotional ups and downs of IVF. Psychotherapist Helen Adrienne recommends practicing something called the relaxation response, a type of breathing meditation that combines breath work with repetition of positive reinforcement.

“It helps combat the onslaught of changes by combining the impact of our breath, with the effort to prevent intrusive negative thoughts,” Adrienne says. The practice is simple. Pick one word, phrase, or prayer and repeat with each exhaled breath, for 10 to 20 minutes a day. Repeated positive reinforcement can help thwart spiraling into anxiety and depression, which can be unfortunately common during infertility treatment.

A 2018 study noted that some recent research has found an association between lower distress and increases in pregnancy rates.

“Evidence of how crucial mental health is to IVF outcomes is compelling,” says Aimee Eyvazzadeh, a California reproductive endocrinologist (who is also known as the Egg Whisperer for her IVF successes).

“Emotional health, mindfulness, nutrition and lifestyle are imperative,” she says. “These types of programs should be mandatory with treatment. They’re helpful in understanding how thoughts change through the journey. Also, learning how to connect better with a partner, process bad news, or handle a new diagnosis. Having a fertility psychologist, and acupuncturist [if possible], is also beneficial in providing extra support.”

But sometimes even all that is not enough.

Many couples stop ART/IVF because of finances or the intense roller coaster of emotions it elicits. But ending the pursuit of IVF doesn’t have to mean the end of the road. Donor eggs, embryo or sperm adoption, surrogacy and adoption are all ways of growing a family. Choosing nothing is okay, too.

And experts point out there are reasons for those pursuing IVF to remain hopeful.

The average amount of treatments is three to four, but recent studies say that successful live birth increases with cumulative cycles. Women ages 40 to 44 have a 11 percent chance of live birth in their first round, which jumps up to 37 percent after eight times. Overall, according to some estimates, 54 to 77 percent of women will get pregnant And have a baby by their eighth cycle.

IVF is a club with members hidden in plain sight everywhere. At least it seems that way from my IVF clinic’s perpetually crowded waiting room. This experience can feel isolating, but even as strangers, a common bond, a perseverance, links all going through it.

As for me, IVF has been a road paved with heartache and frustration, but also gratitude that this technology may help me and many others. It has also given me a will to passionately fight for something like I never have before.

Thinking about my embryo, on ice, waiting for my husband and me, fills me with excitement and fear. And though the journey to get to it feels never ending, hope still remains, and that’s enough to keep me on the ride.

From sex selection to surrogates, American IVF clinics provide services outlawed elsewhere.

A fertility center mixed up two couples’ embryos, lawsuit says. When they found out, they had to trade babies.

The Fertility Frontier: a Washington Post series