Benji Berlow and Lisa Sobel-Berlow bet against the odds on Derby Day this year. Today, more than two months later, they still don’t know if they will win.
On May 6, surrounded by jockey-helmeted doctors, nurses, and family in a surgical suite at the Kentucky Fertility Institute in Louisville, Benji and Lisa succeeded in the first step of in-vitro fertilization (IVF) – harvesting eggs – a process they hope will lead to the birth of a child.
Although no horses or cash is involved in this story, Benji and Lisa kept to the Derby theme by naming the three embryos still in the “race.” The preliminary “winners” were MyHeartsDesire, CurlyDave, and So-Ber.
The next big day will come sometime at the end of July, when they find out if the one remaining viable embryo, CurlyDave, can be implanted in Lisa’s womb and make it to the finish line, also known as childbirth.
The process already seems more like a marathon than a horse race. The 30-something Louisville couple has been trying for three years to have a child, and this is their second round of IVF. The first try ended when none of four embryos proved viable.
Like many infertile couples, Benji and Lisa had other options, including adoption and surrogacy, but they weren’t ready to give up on giving birth to a child from their own egg and sperm.
“We at least want the chance to have our own biological child first, just like any other couple,” Lisa said.
According to Hasidah, a Jewish nonprofit organization that assists infertile Jewish couples in becoming pregnant, one round of IVF costs an average of $12,500. That only covers the procedure itself. Drugs, testing, and other expenses push the average bill to $24,000 – for just one round of IVF. The total, which often includes more than one round, can easily top $60,000.
Benji and Lisa work for Jewish Louisville. Benji is the rabbi’s assistant at The Temple; Lisa, the engagement & digital media coordinator at the Jewish Family & Career Services. The couple have been open about their efforts to become parents, even blogging about their odyssey and resorting to crowd funding to defray the costs. They raised $25,000 for their first round of IVF, $5,000 for their second so far.
For the Derby-themed second round, they qualified for a $10,000 grant from Hasidah. They also used leftover medication from the first round.
To Rabbi Idit Solomon, founder and CEO of Hasidah (the Hebrew word for stork), cost is a hurdle that no prospective parent should face alone.
“This barrier to treatment is like putting your foot on the brake,” Solomon said, an analogy she repeatedly used.
Solomon knows what she talks about. She and her husband, former New York Times columnist and current University of California at Berkeley Law Professor Steven Solomon, went through years of fertility treatment, spending approximately $100,000.
“We started with insurance, so a couple of our rounds were covered,” Solomon said. “Then we paid out of pocket.”
She recalled one round where she was at a clinic being tested while her husband was sitting in their car in the parking lot lining up consulting work so they could afford the procedure consulting over the phone to pay for it.
Their efforts finally paid off. They have three children. Still, the financial obstacles to IVF irked Solomon. There wasn’t much help for Jewish couples seeking fertility treatment.
“There were organizations in the Orthodox world, but they just didn’t speak to me,” Solomon said. “There was nothing at all, so I thought to myself, ‘Here we are, bemoaning the declining birth rate, and here I am saying I’d love to have Jewish kids, but I need help having them. That was the motivation.”
The former vice president of Jewish Education & Identity at the Columbus Jewish Federation, Solomon saw firsthand how many resources are spent on raising Jewish children, compared to actually having them.
“I didn’t need help raising kids. I needed help in having the kids,” she said. “People were being incentivized to raise their kids to lead Jewish lives. I was losing hope of ever having kids.”
So she started Hasidah in 2013 and gave out her first grants the following year. Since then, more than 300 parents have sought help from Hasidah, which is supported by individual donors. It has awarded 17 grants for IVF, resulting in 11 births. The latest two – twins born to an Orthodox rabbi and his wife from Oakland, California – arrived in late June. Solomon attended the bris and baby naming.
“We now have a minyan,” she quipped.
Hasidah also trains rabbis and cantors to change community perceptions about fertility treatment, through counseling and workshops.
“We talk about how to create more sensitivity and inclusion for people who are facing fertility challenges,” Solomon said.
Since Hasidah’s founding, other organizations have begun offering varying degrees of help to infertile couples, from full assistance to counseling only. Solomon rattled off the names of organizations and federations.
There are only a handful, she noted, and that’s the problem.
“The fact that I can identify them,” she said, “shows they are the exception and not the rule.”
Reuben Rotman, CEO of Network for Jewish Human Service Agencies (JHSA), which JFCS belongs to, said Hebrew free loan associations across the country, better known for helping families pay their bills, also have dedicated funds for parents for fertility treatment.
“They will accept this as a reason for the loan,” Rotman said. “You don’t have to be behind in your credit card.”
There’s another bonus: “The money is recycled,” Rotman said. “So when you pay back, you’re able to help other families.”
While many couples turn to fertility treatment to become parents, it is only one of several options.
“People have lots of choices, said Judy Freundlich Tiell, executive director of the Jewish Family & Career Services. “I see people who had tried everything from adoption to various kinds of fertility treatments to making the decision that they will get their nurturing needs met in different ways. It’s a personal decision.”
Tiell has also seen couples and individuals opt for surrogacy, with all the questions and issues that accompany that choice. As science and technology evolve, even more options will become available.
A licensed clinical social worker, Tiell has been counseling infertile couples and individuals for more than three decades. She also co-founded a Louisville chapter of Resolve: The National Infertility Association, around 1980.
Today, the JFCS continues to provide counseling for families seeking to become parents.
“We have counselors here who are attuned to those issues and help people focus on them and what they mean,” Tiell said. Counseling, she said, helps families deal with reams of issues related to their difficulty in becoming biological parents.
“It’s really taking a look at how one feels about what’s going on, that loss of control, that your body doesn’t work the way you think it should work,” she said. It could be any one of a number of issues.”
“It can affect a marriage,” she added. “Sometimes it draws people closer together; sometimes it pulls them apart.”
Benji and Lisa seem like a poster couple for prospective parents. Once a month, the couple shows up at Temple Shalom in Louisville, where they perform No-Shush Shabbat for children. Benji strums guitar songs for the little congregants as Lisa sits in the pews, smiling and joining in whenever grownups are cued.
Their adventure began three years ago. After failing to get pregnant, they read a veritable library of books and blogs to educate themselves, all while Lisa “meticulously” tracked her temperature with countless ovulation sticks. At the same time, Benji began a series of tests.
After six months of semen analyses, CT scans, genetic testing and other procedures, Benji learned he had a zero sperm count, he was born with one kidney and was missing the tube that connects his testes to the seminal duct. He can produce sperm, but it goes nowhere. On the other side, the kidney and tube contain multiple blockages.
“The way I describe it,” Benji said, “is I have very bad plumbing.”
To take part in fertility treatment, he would have to have his sperm surgically harvested. Doctors recovered six vials of sperm – enough for six cycles – but since it was not in seminal fluid, it could only be used in an enhanced IVF process – called ICSI – where only one sperm can be used at a time.
Meanwhile, Lisa learned that she has a “low ovarian reserve” – fewer eggs than she should have at her age. Normally,
See IVF on next page doctors expect 15-20 eggs per IVF cycle. Lisa had six in the first round, three in the second.
Each round, she underwent barrages of medication, costing $700 to $7,000, depending on discounts. She kept track of pills and prices with a spreadsheet.
She also tried acupuncture to increase her blood flow, lower her stress, and give her some badly needed “me time.”
During one interview, Lisa held up her right arm, revealing an enormous purplish bruise where blood had just been drawn to check her medication levels – her “badge of honor,” she called it.
Then there was pregnancy screening, anesthesiology and a host of other expenses. The couple that loves and desperately wants to have children became disillusioned with the miracle of birth.
“The fairy tale we’re all given … was ripped away,” Lisa said, “and it’s not gently ripped away; it’s a massacre.”
Lisa and Benji hope their story will lighten the ordeal other infertile couples experience.
“There is no standardization of care,” Benji said. “No two couples going through this have the same protocol.”
Finding insurance is difficult. Some states require insurance, other prohibit it because reproductive technologies have been connected with larger debates including abortion, reproductive choice, birth control, and LGBTQ rights.
Some individual corporations provide coverage. Starbucks, for instance, covers $15,000 for all employees, full- or part-time.
Expenses aside, Benji and Lisa are especially driven by the stigma borne by infertile couples.
Rotman, of the JHSA, agreed.
“Families keep asking when you’ll get pregnant,” he said, “while siblings, cousins, and close friends are starting families.”
Since they have gone public, Benji and Lisa say, many others, including some of their friends, have “come out of the closet,” as Benji said, sharing their own stories.
“That definitely shows the stigma just within our circles of friends who didn’t want to be open about a process that took an emotional toll,” Benji said.
If the stigma of failing to conceive can be changed, other hurdles will fall like dominos, they said. “When insurance companies start covering,” Lisa said, “standardized care will follow because insurance companies will require it. But it starts with that cultural stigma.”
In the Diaspora, at least, culture plays another role. The fertility rate for Jews is declining. According to the Pew Research Center, the Total Fertility Rate (TFR) for Jews from 2010-2015 was 2.3 children for woman. That’s slightly above the 2.1 “replacement rate,” the figure typically considered necessary to maintain a stable population.
But a breakdown of the Jewish TFR tells a different story. The fertility rate among Jews in the Middle East and North Africa was 2.8 for the five-year period, but it dropped to 1.8 in Europe and 2.0 in North America.
Fertility treatment alone won’t move those numbers much, Solomon warned, but that’s not the point.
“I don’t think I’m doing this to increase our birthrate,” she said. “Helping people through IVF and fertility treatment in general is getting your foot off the break. We have our foot on the break. I don’t think IVF will put [Jews] over the replacement rate where we’re flourishing, but we’re stopping some of the decline.”
Benji and Lisa don’t yet know if they are likely to count as part of the decline or add to the growth. MyHeartsDesire did not implant. That leaves them with CurlyDave, a mosaic embryo back in contention.
Mosaic means that some of the five cells tested from this embryo were abnormal. There were no genetic abnormalities, though, so it is still viable. They hope to transfer CurlyDave by the end of July.
Experiencing more of a roller coaster ride than horse race, Benji and Lisa have learned to accept setbacks.
“Throughout this process we’ve come to realize there are only so many variables we as humans can control,” Lisa said, “and we’re doing a pretty good job of controlling them. But there’s still that aspect – the supernatural, the spiritual, the higher power – that’s ultimately in control.”