Betty Jacobs first heard about the freezer problem on Thursday, March 8, when she scrolled through her Facebook news feed. That day, a local Ohio paper had published an article about temperature changes at University Hospitals Rainbow Babies and Children’s Hospital, where Jacobs underwent IVF and had her twins in 2016. Because of these temperature changes — which had occurred the previous Saturday — more than 2,000 frozen eggs and embryos were potentially damaged and unviable.
Jacobs had two embryos frozen in their storage facilities, but was reassured when the news report said that the hospital had notified all of the affected people. “I thought, it didn’t involve me, and didn’t think anything of it,” she says.
The next day, she learned she was wrong. When she picked up her mail, she saw a letter from the University Hospitals. “My heart just dropped,” she says. “I just knew in that moment that I was probably affected too.”
The letter, addressed to “community member,” informed her that there was an issue with a storage tank that housed frozen eggs and embryos. It provided a phone number for Jacobs to call to set up an appointment to speak with a fertility doctor. Desperate for answers, Jacobs called immediately, and when her doctor was booked up over the next few days, she asked to speak to any doctor who might answer some of her questions. But even then she had to wait until after the weekend — two more days — before a doctor was available by phone.
“That weekend was horrible,” says Jacobs, 43, who is a stay-at-home mom in Concord, Ohio. “I didn’t get any sleep. I had a lot of emotional moments.” She was taken back to the equally difficult days when she was trying to get pregnant, waiting by the phone for results from her hormone tests which would indicate whether her IVF cycle had been successful or not. “Those were not fun days,” she says. “When you are done at a fertility clinic, it’s almost like a release, because it’s such an emotional place to be attached to.”
Yet she was still attached. Two of her embryos were still stored there, and she viewed them as potential new siblings for her children if she decided to get pregnant again. The embryos were especially precious to her, since Jacobs was unable to get pregnant using her own eggs and decided to ask someone she knew to be the donor. She had paid $15,000 for the IVF cycle that included the donor eggs and the freezing of her embryos. (She paid for her medications separately.) That donor was no longer available to donate more eggs, so the embryos were her children’s only chance for biologically related siblings. “If I had more children, I would want them to be biologically related to my twins,” she says.
But once she learned that her embryos were stored in the tank that was compromised, those hopes were dashed. When a nurse suggested she speak to a doctor about her options, she replied, “I have no options. Those [embryos] were it.”
While she waited to talk to the doctor, Jacobs joined a private Facebook group of families affected by the incident; in just a few days, the group had more than 100 members. Some had already spoken to their doctors, and others, like Jacobs had only received letters. All were outraged and confused over the lack of explanations.
Lynette Beagle, who had eight embryos frozen at the facility, joined the group when she still had not heard back from her doctor more than a week after the incident, and decided to page him. From everything she heard from the other women, she suspected that few of the eggs and embryos could be rescued, yet she held on to hope. But her doctor confirmed her worst fears. “I’m really, really sad that he confirmed that my embryos are dead,” she told TIME in a direct Facebook message.
Beagle’s embryos were created in 1996, when she was married to her now ex-husband, she said in a phone conversation. He had been diagnosed with testicular cancer, so they decided to use a sperm donor, and Beagle had twin girls. She decided to freeze the remaining eight embryos, and paid about $400 a year for the storage. “I never thought about disposing them,” she says; if she had decided not to use them, she would have donated them. “I always wanted them to have a chance at life. Those were mine; they are my babies. I always knew I had them, and now they are not there.”
Two class action lawsuits have been filed against the Ohio hospital, claiming that the hospital did not have proper procedures in place for responding to a potential equipment failure with the freezer tanks. In a statement, the University Hospitals said that it is investigating the issue, “bringing in independent experts to ensure we understand all aspects of this occurrence and do everything possible to address the situation.” In a separate, unrelated incident that occurred on the next day, a fertility clinic in San Francisco said that thousands of eggs and embryos may have been damaged because of a liquid nitrogen failure in a storage tank.
A University Hospitals spokesperson said that on Saturday evening on March 3, the temperature in the liquid nitrogen tank increased to the point where the frozen tissues stored inside were likely no longer viable. The fluctuation was discovered on Sunday, when hospital personnel came in to work and heard the alarm.
Beagle and Jacobs still struggle to accept that their embryos are now gone. “I look at my twins, and they came from that same batch [of embryos,]” Jacobs says. “I look at them and think, had I picked different embryos, then one of them wouldn’t be here. It’s a weird thing — to know that they came from that same bundle.”
Jacobs says the doctor offered to pay for another IVF cycle with donor eggs, but she declined, since she would only want biologically related siblings for her twins. She says the hospital also offered to reimburse her for the storage costs she has paid so far. “This is bigger than storage fees,” she says. “I said thank you, and hung up.”
For now, Jacobs just wants answers, and isn’t sure who, or what, is at fault for the problem with the freezer. “There is definitely blame to be placed, I just don’t know where to place it,” she says. “They tell me there was a malfunction somewhere, but whether that was mechanical or human, I don’t know.”
She feels, however, that more could have been done, especially to better inform affected families like hers. “I don’t trust them at this point,” she says of the hospital. “When I didn’t get a phone call and had to see the news on Facebook, that’s when that trust ended for me. I should not be seeing such emotional and private things over Facebook first.”
Even when the letter arrived, it wasn’t addressed to her personally — another insult, she felt, in an already difficult situation. “I am somebody, and I should matter,” she says. “Somebody didn’t just throw out the wrong trash. This affects people for the rest of their lives.”
“My daughters are priceless,” says Beagle, “and those were their siblings.”
What can change, Beagle hopes, is for hospitals to take more accountability for their storage facilities, install better backup systems and use different storage policies that would separate embryos or eggs from the same person, for example, into different tanks, so that if one failed, there were other tissues available. “I just don’t want this to happen to anybody else,” says Beagle. “I want something to be done.”