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What It’s Like to Be a Victim of a ‘Fertility Disaster’

On March 4, the storage tanks holding frozen eggs and embryos at two fertility clinics across the country from each other malfunctioned. At University Hospitals Ahuja Medical Center’s Fertility Center in Cleveland, the storage tank’s alarm sounded to indicate dangerously low liquid nitrogen levels, but, it being the weekend, the sounds went unheard. At Pacific Fertility Center in San Francisco, a lab director noticed a dearth of liquid nitrogen during his routine day’s-end check. He immediately moved the tiny straws full of eggs and embryos to a working tank, but damage may have already occurred. To describe what happened to the hundreds of hopeful patients whose dreams may have been exploded this week, news coverage began referring to the two incidents combined as a “fertility disaster.”

Fertility patients spend substantial amounts of time and money on their efforts: Egg freezing costs $8,345 at Pacific Fertility, while a round of IVF is substantially more. These procedures are rarely covered by insurance and mean daily shots in the thigh or stomach, swelling up on hormones, and weeks of appointments.

Given what’s at stake, it’s no wonder the class-action lawyers have descended. “What is the price for the loss of parenthood? How much should one be compensated for having their ability to have children taken away from them through the fault of these clinics?” castigates attorney Adam Wolf, with nationwide firm Peiffer Rosca Wolf who is planning to file in California on behalf of a Pacific Fertility plaintiff by week’s end. Two lawsuits have already been filed against University Hospitals’ Fertility Center in Cleveland; on Tuesday, a woman filed the first lawsuit against Pacific Fertility Center. Dozens more lawsuits are expected. But even a substantial financial payout to every member of the class in any of these cases won’t rectify the heartbreak. These are people who want cooing babies, not checks.

Here, three Pacific Fertility Center patients share their reactions, in their own words.

Female, 45, single mom by choice, computer scientist, San Francisco: 

I just did one cycle, and I believe it was maybe 12 eggs. I did it specifically before I was 40. I work full-time in Silicon Valley, and I am a single mom of a now 8-year-old. I had my child out of wedlock — to use that arcane language — with a partner. I have full custody, and he lives out of state. I had a big work promotion sending me on a two-year rotation in Asia. By the time I would be back I would be hitting my mid-40s, so I wanted to plan in advance, to freeze that time window. Definitely, I wanted to have another child but I didn’t have the situation by the time the work rotation came. I didn’t find someone to settle down with, but I knew I would want to have a child. I paid to freeze the eggs by myself, by my credit card. Now that’s been ruined.

When I received the letter, which was on Saturday, it was a little bit ambiguous. It did say it looked like my eggs had been affected but also that they needed to do more investigation. I’m on several online groups, and there was talk about this, so it seemed there were others that had received letters with slightly different wording. I wondered what that meant. The reaction online has been surprisingly muted. I think it’s because this is still a surprisingly taboo topic. I don’t think people openly talk about harvesting or IVF, even here in San Francisco.

I called Pacific Fertility earlier today to check in. I hadn’t gotten a second letter. They said they are going to prioritize looking specifically into my sample (I’m not sure why), but they are going to call me back tomorrow or the day after with the results, and to discuss next steps. They say they plan to try to make sure that all of their patients are happy. It has been mentioned on the Single Moms by Choice Facebook group that this is at least the second time this has happened at Pacific Fertility. The first time around, they offered free cycles to redo the harvesting. Now I’m 45 and I don’t know that I’ll even be able to do any egg harvesting, so the free cycle is not helpful.

When I searched to look up past incidents, the first Google hit was on a law firm taking on this case. I called them up and … you know, I don’t know to what extent they just talk it up. They said they are getting calls every hour. People are obviously very upset and very emotional. This isn’t just property or documents — this is future children. It is a direly under-regulated area. The requirements are very lax, in terms of to what extent the clinics have to look after the embryos and eggs they store.

At first I clung to hope. But then I read the letter again and now I realize they are saying I have been impacted. It took me back to the time five or six years ago when I did it. I had no idea how involved a procedure it was going to be. It ended up being so taxing. Over the entire time you are taking the hormones, it really feels like you are hyperaware that you are growing eggs to be potentially future children. So, for me, it really felt like I was growing my future children. This weekend took me back to that time.

My little egg babies were in that freezer, and every year I paid $600 for them to look after them. I have it in my calendar, and I’m hypervigilant every year to make sure I pay, and make sure I have the money. I remember the very first year I actually called up the lab to have them check that everything was okay. I didn’t tell my child about any of this. Even now I wouldn’t. I know my child is devastated to not have siblings.

I’m kind of waiting to see what PFC does. If they just say I can have a free cycle, that’s not going to be relevant. I’m most likely too old.

Female, 35, married, works in nonprofit, trying to have first child, San Francisco:

I feel like we’re the victims of a terrorist attack, or maybe more like a natural disaster. It’s like, is this really happening to us? I’m just tired of everything. I’m tired of trying. I’m tired not knowing. I’m tired of the whole process. I’ve only talked to a few people. I haven’t told my mom. I feel like she’d be so crushed. I think my husband feels like he needs to be there to support me. He doesn’t have any person to talk to, and I don’t know who that person should be for him. This is such typical guy stuff. I feel like he has nobody and bottles it up, but he doesn’t want to vent to me because he knows how upset I am.

I got the email on Sunday, super early morning. It came around 4 a.m., but I didn’t see it until later. It was titled Important Confidential Message, which is so generic, like a “we’ve updated our terms of service” kind of email. So it was not at all what I expected to read. We were home, getting ready to have a brunch party. It was the first time we were hosting people at our new apartment. My husband was starting to clean up the place. I was like, You need to come over here right now and look at this. I didn’t even finish reading it. I gave it to him to read. He was so angry. He said, I kind of just want to drive over there. I was like, No, I’m sure if we drive there we won’t learn anything. We called around 9 a.m. and got the answering service. It asked, Do you want the doctor to call you back morning, afternoon, or evening? I said all of them.

In our case it’s embryos. We’ve been trying for over three years. We were really, really close. I’m supposed to have my transfer in the next two weeks probably. Now basically we don’t know. We froze three embryos this fall, and this would be our first transfer. We got around 15 eggs, and of those, just three fertilized, which I think is not that uncommon. But it is very scary to think that they got 15, which sounds like a lot, and only three made it.

For us, IVF was a huge deal financially. My husband is a data scientist at a start-up, which we just learned has only four weeks of funding left. I work in the nonprofit industry. We just moved here from New York in October, which was super expensive. Our apartment is pricier than we would have wanted. So spending a lot of money on this means we aren’t going to be able to buy a home anytime soon. We do fine, for sure, but it’s definitely a stretch, and our insurance covers basically none of this. A family is something we knew we wanted, and we had to do it, but it’s a big financial hit, probably $25,000 total this time. I feel like the theme of this experience, for me, is feeling like we are so behind. I was reluctant to go to a doctor to talk about my fertility, so waited a long time. I had one miscarriage, which is also why we waited, because I was fooled into thinking, Oh, this is fine, I can get pregnant. Then the move. Then we had to find a clinic here. Then one round of IUI, which also took time. Now this.

My doctor called me back. He said that they won’t know anything about whether the embryos are viable until the day of the transfer. They will thaw one at a time. If the first is viable, we’ll go with that one. If not, we’ll try the next.

It occurred to me later how much this stinks. If the first one is viable, we won’t know about the others. That’s hugely problematic. If they are not viable, I probably should do another cycle, which is the worst thing ever. It’s pretty awful. I’ve never taken a lot of meds before this, I’d never gone under anesthesia, I had never had to give myself injections. My stomach got all black and blue, and I had to cover it up because it was so awful looking. It’s frightening to think about this giant needle going in you.

Mostly, it’s really frustrating that they don’t have a lot of information. I mean, at that point, it had already been a week. On the Tuesday before, I’d talked to the nurse about scheduling an ultrasound to check on my ovulation for the upcoming procedure, and she didn’t say anything. Now I’m like, Did she know?

I hadn’t known about the Cleveland clinic until my doctor mentioned it in the call. It’s heartbreaking, the whole idea. All the work, and effort, and emotional effort, and doing stuff to your body, and postponing our family timeline. If this timeline works, I would have a baby the beginning of next year.

We didn’t officially ask how they’ll know if the embryo is viable. He said they can’t tell when it’s frozen — they have to thaw the embryo to find out. Obviously once you thaw it, you can’t refreeze it. We did ask whether there might be information from the people scheduled to have transfers this week, but he said I’m one of the first ones. We asked if the embryos end up not being viable, is there financial remuneration? He said yes, definitely, but he wasn’t ready to offer details. In my head, I was thinking they should have to pay for another cycle, and really, they should have to pay for the one that they already lost. If it comes to that, I’d have to talk to a lawyer.

Now the top Google hit when you put in PFC is this firm that says we fight for fertility clients, so I’m sure there is going to be a lawsuit. But they make you sign some pretty serious arbitration clause, which at the time I didn’t really even read. There is no option not to sign. It’s not like a lease where you can make an amendment. You sign or you don’t get service, so I signed. I think sometimes you can get out of arbitration clauses if something extreme happens.

I go in on Friday for an ultrasound to check on my ovulation. Most likely the transfer would be between the 23rd and the 26th. I want it to happen as soon as possible because not knowing is the worst. The embryos are one girl and two boys. We’ve been planning to do the female one first, which I don’t think will change. I cannot believe they don’t have an alarm that goes off. My husband said they even had alarms in his little clinic in graduate school.

Male, 47, married, systems administration, stored embryos with partner to have second child that is a biological sibling to the first, Castro Valley, California:

We are a male couple. We went through a surrogacy process with a third-party donor. My partner has been researching this for years. We met in 2008, and began in earnest in early 2012.

On our first date, my partner was clear that he wanted kids, and if I didn’t, that would be a no-go for us. First we started finding a clinic that does the surrogate and the egg-donor part because PFC doesn’t do that. We found a surrogate through an agency, and a donor through another agency, and once we established those relationships we had to get legal contracts in place. The whole process took three or four months. The egg work was done first. The sperm was my husband’s, a decision we made consciously. I was adopted so I didn’t feel that the biological relationship was necessary. We’re mixed race — he’s Caucasian and I’m Chinese — so we definitely wanted someone of Caucasian descent. The only other major thing we wanted was that they had a good educational background, and he wanted someone slightly on the taller side because most of my partner’s family is quite short. We didn’t go crazy reading résumés and trying to design something, because really you can’t design this since it comes down to probability with each trait.

We learned from a friend about chromosomal testing, and our doctor at PFC was very much in favor. What we agreed to do was to wait for seven days for the blastocysts (early embryos) to grow, and then they biopsied the outer shell and they tested those cells. We started with eight embryos and three came back with chromosomal abnormalities. They did freeze all eight, but those three are most likely not really viable. Of the five good ones, we chose one male for the implant. Our son Henry was born in 2013.

An interesting little mishap did happen there: One time the clinic put the appointments close together and we unintentionally ended up meeting our egg donor. In the waiting area, we were both waiting. We had seen photos and we realized it was her. Both of us figured it out. She was really great, about 20 years old. Once we met her that one time, we didn’t see her again through the rest of the process.

Our original intent was to have another child. We were thinking to have a second one, a girl for gender balance. Then our work and financials changed a bit. My husband went to a start-up, which meant essentially going to a single salary. Plus, he’s traveling a lot to China. So we put it off.

In our case, it is embryos that are stored. There were three male embryos and a female embryo that were frozen. Our son Henry cost us $140,000 to $150,000. Doing it again is maybe around $70,000 to $80,000, not a small amount. We were not actively taking any steps. But the doctors at PFC have a rule about not supporting new parents after the age of 55, which we agreed with. That being the case, we only have seven or so years.

I was the one that found out. I’d already heard about the Cleveland issue on TV news. It didn’t dawn on me to worry about ours. On Sunday night CBS was doing a story. I was half-watching when I saw a picture of PFC’s lobby flash up. I emailed PFC that night. It was our doctor who actually called. He was awesome. We talked for probably 40 minutes.

I’m not fixated on how it happened and why, but I did want to get to the point of knowing whether the embryos are okay. Our doctor was looking at the lab notes as we talked. He said they kept those three that were found to be not viable so they can do a thaw test with one of those and look at the morphology. Because they are stored in the same vial, if any of them are damaged, they are all damaged.

I’ve been telling people it’s like Schrodinger’s cat. It’s a philosophical problem in quantum mechanics. There’s a cat that has been locked in a box with some kind of dangerous material. You can’t know if it’s alive or dead until you open it. But once you open it, and learn, there can’t be a chance that it’s alive anymore. Anything can be in any state, until you measure it. Then it’s fixed. They can’t base the viability on the temperature of the tank. Or the look of the vial. They have to thaw it. And once it’s thawed it can’t be refrozen and kept. You have those fears, and you have those worries, but at some level whatever has happened has already happened.

One thing I hope comes out is this: We’re talking about this one tiny point of a process that every step of the way involves an incremental risk — there are a lot of other pieces of that puzzle. I hope people look at this in a broader context. This could potentially close any possible avenues that we would have had to have a second child; that’s the hard part. Our doctor said we will look at them under the microscope and they will be either living or dead. This is living tissue. That’s how I think about it and how I speak about it. I know they like to use softer language, but that’s the reality — at least with embryos. There is no in-between dead and alive.

What It’s Like to Be a Victim of the ‘Fertility Disaster’