27 Mar What It is Like to Lose a Child That Did not Exist Yet
“I was still their mother and I wanted to protect them and I feel like I failed them now.”
Published by Hearst Communications via Marie Claire
by ELISSA STRAUSS
MAR 26, 2018
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For most, the news came by way of letter: There was a temperature fluctuation at their fertility clinic’s storage facility and some of the eggs and embryos were compromised. Please call for more information.
Over a thousand patients who used University Hospitals Fertility Center in Cleveland or Pacific Fertility Center in San Francisco would go on to learn the worst. In the past week, both centers have informed patients that their embryos or eggs are either definitely destroyed or potentially destroyed, a result of storage tank failures that occurred, coincidentally, on the same day.
“I started to get a little concerned, so I started Googling to see what this can mean,” says Kathy* of her reaction after receiving the news. “But even in the age of the internet, nothing came up. When is the last time you Googled something and nothing came up?”
“When is the last time you Googled something and nothing came up?”
Kathy and her husband, Ben* underwent IVF in 2014 because of male factor infertility. Chemotherapy had left Ben sterile, and the only way they could have biological children was by using the sperm he banked before being treated for cancer.
The couple, who already have twins, were planning on implanting one of their five stored embryos this coming August. They weren’t sure if they wanted one or two more children, but had decided that however many embryos they had leftover when they were done growing their family would be donated to another couple.
“We wanted to do an open adoption, and keep in touch with the family. I realized that I needed to know that they were okay,” Kathy tells MarieClaire.com.
But now none of this is possible, because their five embryos, stored at University Hospitals, are gone.
“Even if it didn’t make sense for my husband and I to raise them, I was still their mother and I wanted to protect them and I feel like I failed them now,” she says.
In 2013, Eric and Dana did IVF as an insurance policy. They weren’t ready to have children yet, but they were worried that their mid-30s bodies wouldn’t be capable of having children later.
This proved unnecessary, and the couple went on to have two children the old-fashioned way—without the help of reproductive technology.
Last week they learned that their stored embryos were in an affected tank, and may or may not have been ruined by the malfunction. The only way to find out the extent of the damage is to thaw them and try to use them, which is something they aren’t ready to do now, or, possibly, ever.
“There is no way to be sure about the status of the embryos unless we need them and they work,” Eric tells MarieClaire.com. For now, “we’ll be left to wonder if they scuppered our chances to round out our family.”
There are a number of lawsuits being filed against University Hospitals and Pacific Fertility and the lawyers involved must determine what kind of compensation makes sense for the loss of something many find, as Kathy puts it, “irreplaceable.”
The embryo enjoys a somewhat fuzzy legal status. It is considered property, but one deserving special respect due to their potential to become a person, as the most commonly referenced court case on the subject established. The clinics did not kill people, but they lost an entity worth far more than the roughly $16,000 it cost to create it. Sixteen-thousand dollars is the average price of a single round of IVF that might, if the stars align, replace what’s been lost. Add to this the less quantifiable amount of time and energy spent going to the doctor on a regular basis and self-administering sometimes painful and crazy-making medication. The value soars to the imprecise but nevertheless indisputable a lot.
Adam Wolf, an attorney from the law firm Peiffer Wolf Carr & Kane Abdullah Carr and Kane who is working on a number of these cases, tells MarieClaire.com that putting a dollar sign on an accidentally destroyed embryo is one of the most challenging aspects of these lawsuits.
“How to place a monetary value on an embryo is something I have struggled with for years. Because in some ways there isn’t enough a money in the world, and it is a little bit gross to think of monetary figure to represent the value of future children,” he says. “On the other hand, that is how the legal system compensates people.”
“It’s far more challenging to think: what is the price of parenthood? How much do you value the ability to have children?”
“It is really easy to quantify the amount of money that someone has spent on the process or treatment, and has paid in storage fees. It’s far more challenging to think: What is the price of parenthood? How much do you value the ability to have children?” he continues.
Making this more complex is that fact that those who lost embryos are experiencing the loss from a wide variety of contexts…
For most families who lost embryos or eggs, any satisfactory settlement will need to go far beyond a free round IVF or egg retrieval. One recent class action lawsuit against Pacific Fertility was filed for $5 million on behalf of 100 people, or $50,000 each if divided equally. Lawyers filing individual lawsuits, as opposed to class action ones, say they are taking personal circumstances into consideration when coming up with a price.
In addition to financial compensation, many also want to see some necessary reform to storage protocols.
“One of the problems is there is no requirement to report the loss or accidental destruction of eggs or embryos. My understanding is that this is not a frequent occurrence, but does happen at times,” says Wolf. “That is very scary. We can have the best technology and science, but without full automation and tighter regulation it is still susceptible to tragic human error.”
In response to the recent storage-tank failures, the American Society for Reproductive Medicine said they plan on looking into the circumstances in which this happened, and “[determining] an appropriate set of recommendations for our members and our patients.”
The industry is in dire need of such policies. According to Jake Anderson, co-founder of the infertility site FertilityIQ, current regulation of storage facilities are merely “ceremonial.” “Mostly they just show up and make sure the paperwork is in order,” he says.
Despite the recent tragedy, Anderson is skeptical that the industry, which is both highly fragmented and profit-driven, will ever agree to further oversight. More regulations or not, he suggests patients be more proactive about considering the value of their potential embryos before they choose a clinic.
“It feels very private to me how we conceived our children and so this loss feels private.”
“Most people think of storage as the more perfunctory, rote component of IVF, after all the hard work,” but it’s not, he explains. When considering which clinic to use, patients should “ask basic questions about the lab: How do they protect against this unmitigated disaster? And in light of what just happened, what measures they have taken?”
But while those working in fertility industry are eager to consider the implications of the storage malfunctions, many of those whose embryos were affected by them aren’t able to grapple with the future quite yet.
Eric and Dana remain in a state of uncertainty. “We’re in a holding pattern to know what we have, or what we’ve lost,” says Eric, describing he and his wife’s current emotional state.
And Kathy and Ben say that, while they have more sperm banked and therefore could go through another round of IVF, they are too shocked and devastated to decide on any next steps. Complicating matters is the fact they are processing this loss alone.
“It’s been a very weird grieving process. Ninety-nine percent of the people in my life have no idea how we made our children,” she says. “It feels very private to me how we conceived our children and so this loss feels private.”
“I talked to a few people we are really close to and they just didn’t understand,” Kathy goes on. “They responded with things like, ‘At least you have the twins, and you could still have more children if you want.’ But this isn’t like, ‘Oh, what a pain, I have to go through another cycle.’ I lost something I could never replace.”
Lost Embryos? | FREE Consultation
If you or your family have been the victim of the embryo disaster at University Hospitals Fertility, please Contact the Fertility Lawyers at Peiffer Wolf Carr & Kane for FREE Consultation by filling out our simple online Contact Form or by calling 216-589-9280.