Behind the Byline: On IVF as a ‘Guarantee’

So many people used that word in our conversations (and I had conversations with so many people).

Photo by Nadezhda Moryak: https://www.pexels.com/photo/an-illustration-of-fertilization-8680337/

Earlier this week, Slate published a story I’ve been working on since August, about people who decide to stop pursuing IVF. For many I talked to, this effectively meant they would stop pursuing fertility treatment altogether. (The common alternatives — donor eggs, adoption, and surrogacy — are complicated, to say the least, and often incredibly expensive.)

I just looked at my Trint drive to try to get a sense of how many hours I spent on this story. I’ve got at least 614 minutes, or more than 10 hours, of recorded interviews, though that’s just the first round; that figure doesn’t account for the many (so many) follow-up calls/texts/emails. (I haven’t gotten around to filing those away neatly yet.) I’d say a conservative estimate would be 12 hours on the phone with patients and experts, but mostly patients.

Everyone’s story was different, of course, but also, so many of them said the same thing to me: In the beginning, they assumed IVF would be a guarantee. A hard road, for sure. But at the end of it, a baby.

One woman, who I called Charlotte in the story (almost everyone I spoke to wanted to be anonymous, and I was happy to grant that request), miscarried at home, at seven weeks. She said she was shocked — she used that word several times — and so flustered she flushed the embryo. (A very normal thing to do, but she wishes she had had the presence of mind to fish it out of the toilet and bring it to the clinic for testing.)

Why didn’t anyone at her fertility clinic warn her of the possibility of miscarriage, she said in our interview, and tell her what to do if it happened?

Melissa: What kind of conversations do you wish [your medical team] had encouraged you to have?

Charlotte: Like, marriage counseling. Just, counseling in general. Being prepared of what could possibly happen if you miscarry at home. … Because when you make those embryos and they don’t stick when they transfer, that’s — in my opinion — that’s a loss of life.

She reiterated a few times that she wished her medical team had encouraged her and her husband to engage in counseling while undergoing IVF. And she came back to the “guarantee” idea a lot.

Charlotte: I think it's completely just missed … [T]hey should really encourage couples or individuals going through it that you need to get some additional support and some therapy to back you up with this, because there is no guarantee.

But that’s, you know, their business. They can’t say that. They don’t want to tell you that it’s potentially not going to work. They want to tell you that you have a great AMH and your FSH and your LH and your TSH everything is great! Your numbers are great! It’s gonna work!

Well, it didn’t for us.

It’s an interesting question, and one that I’m mulling for a future story. How much responsibility do healthcare professionals have to emphasize the drawbacks of a procedure, or the possibility that it might not work at all? It seems, on the one hand, almost like an insane question: Of course healthcare professionals are ethically required to tell patients such things, otherwise it wouldn’t meet the standards for informed consent. But you hear all the time about people who say they were surprised by side effects, or by a procedure that didn’t seem to deliver what it was meant to. (The writer — and my friend — Katie Heaney touches on this in her great essay for The Cut, on her “breast reduction from hell.”)

Charlotte, who had her first fertility consultation in 2019, felt her doctors had been dishonest with her about her chances of success using IVF.

Melissa: You said that you felt you were feeling now lied to and cheated … I'm curious to hear you say — what do you mean by that?

Charlotte: That idea, I think, that IVF would give us our baby. You know, when you put down $18,000, you – what did my husband say? You expect a return on your money. And it wasn’t the case for us.

Over and over again, women (and, to a lesser extent, their male partners) told me the same thing: They’d assumed IVF was a “guarantee.” So many of them used that same word. In the story, I followed a couple I called Mia and Chris; Mia told me the same thing.

Mia: [L]ike most people, I went into it assuming it was going to work the first time. It's like a guarantee, right? People do IVF and they get a baby. This is how it works, right? Like, you people don't realize — people don't realize that it's not a guarantee.

I tracked down the relevant statistics for the Slate piece, but don’t make me do that again; let’s just look at these stats cited by the BBC this fall:

And yet the live birth rate, per embryo transfer cycle, for women aged 35 or so is still just 30% in the UK and 39% in the US. In women of all ages, only 45% of embryo transfer cycles led to a live birth in the US, although that has grown from 36% in 2011.

So if you’re older than 35, it’s a gamble.

I’m not sure what to do with that. Should fertility doctors dwell more on that idea? How useful, in this context, is hope? It’s such a cynical-sounding question, but it’s something almost everyone I spoke to for the story dwelled on, unprompted. (You could argue, as some of the experts I talked to did, that my sample was biased toward this opinion, as I mostly spoke to people who were on the precipice of quitting fertility treatments. But, I don’t know — those stats suggest a *lot* of people are in that category.)

My (wonderful) editor added this line to the end of the story:

Maybe there could be a deeper acknowledgement of the reality that not all people who are childless wish to be that way—and yet, their lives can be full of joy and excitement, too.

That is a giant ask, a total cultural reset, but I think that’s pretty much it. That’s what all of those 12 hours of conversations were circling.

Anyway, I hope you read the piece. I don’t think I’ve ever worked harder on a story in my life, and I’ve been doing this now for almost 20 years.