By Jennifer Weiss, New Jersey Monthly Magazine, March 2007
Twenty years ago, the Baby M case shook the world. Since then, thousands of New Jersians have create familes with the help of reproductive medicine.
Grace does not want her lunch. Six months old in December, she squirms in her high chair and cries as Dana Lustig, the woman Grace will call “Mom,” tries to spoon food into her mouth.
“Am I not going quick enough for you? Or do you not want it?” Lustig says in a sweet, if harried, singsong.
They look like any other mother-daughter pair: the baby with brownish smears of squash, apples, and apricots on her bib and cheeks, and the 32-year-old woman with a wide smile who warmed, stirred, and tasted the food before serving it. This lunch, taking place in a well-appointed dining room in Oakland, could be happening anywhere.
But this pair is less typical than they appear. Grace is not biologically related to Lustig, nor did she grow in Lustig’s womb. Told by doctors that she should not conceive or carry a baby after the birth of her son, Drew, Lustig and her husband, Rich, chose an egg donor, then borrowed her sister Danielle Finn’s body for nine months. Finn, 27, delivered Grace at Valley Hospital in Ridgewood in June.
Stories like Lustig’s are increasingly common in New Jersey, which has 21 known fertility clinics—more, per capita, than any other state. Infertility, the inability to conceive naturally or carry a pregnancy to full term, is most often resolved with fertility drugs or the surgical repair of reproductive organs. But in vitro fertilization (IVF) and related procedures, known collectively as Assisted Reproductive Technology (ART), are being used more frequently as they become safer and more effective. (Live-birth rates associated with such procedures went up, from 19.6 percent in 1995 to 27.7 percent in 2004.) In New Jersey, 8,299 ART procedures were performed in 2003, nearly double the number performed seven years earlier. That same year, the most recent for which numbers are available from the Centers for Disease Control and Prevention, 3,379 infants were born in the state through ART; the only states with more ART births were California and New York.
As thousands of state residents and others who have visited New Jersey’s clinics have discovered, a diagnosis of infertility no longer means a couple can’t get pregnant or become the parents of a child who is at least partially biologically theirs. Many times, it means a new chapter in their lives—one with elements of romance, drama, and science fiction—is about to begin.
Diana Lustig was diagnosed with breast cancer when her son Drew was one year old. Doctors advised against having another baby. “Hearing that was harder than hearing the [cancer] diagnosis,” says Lustig, who had hoped to have three children. She and her husband, who both come from families of three, wanted Drew to have siblings.
Lustig wondered if she was being ungrateful. She had a happy, healthy child, but all she wanted was another one. “I was putting all this guilt on myself,” she says. “But for me, being able to have another child felt like life goes on, and I’m not letting the cancer control my life.”
Lustig and her sister, Danielle Finn, were tested for the hereditary BRCA2 gene mutation, which is linked to cancers of the breast and ovaries; they learned Lustig was a carrier and Finn was not. As a precaution, Lustig had her ovaries removed. With no means of producing eggs, and an illness that could have been aggravated by a pregnancy, she and her husband began to investigate their options. Lustig asked a friend if she would carry a baby for her, knowing it would be “a huge decision” but not fully appreciating how much was involved. The friend declined. Lustig also broached the subject with Finn, but both women felt the timing was wrong. “My sister hadn’t had a child yet, and she was newly married,” Lustig says.
In December 2004, Finn and her husband had their first child, a girl they named Caitlin. Lustig and her husband decided to adopt. Then, in April 2005, Finn called her sister. “She said, ‘I’d like to take you up on your offer, I’d like to carry your baby for you,’” Lustig says. “I was floored.”
There followed a series of conversations, psychological counseling sessions, and early-morning visits to the Institute for Reproductive Medicine and Science at St. Barnabas Hospital in Livingston. There, Finn was injected with hormones that synched her menstrual cycle with that of an egg donor, a woman Dana and Rich Lustig chose through an agency and brought to New Jersey from the Northwestern U.S. Stimulating the donor’s follicles with hormones yielded fifteen eggs, of which six were fertilized with Rich Lustig’s sperm and became embryos. The two healthiest embryos, a male and a female, were implanted in Finn’s body. Within ten days, the Lustigs learned that one had successfully attached to Finn’s uterus.
In the months that followed, the Lustigs brought Finn meals and babysat Caitlin, who is now two. Finn and her husband had recently moved, and Rich Lustig painted most of the interior of their house for them. After Grace was born, the Lustigs sent the couple on vacation. While they didn’t pay Finn a fee, the arrangement cost about $110,000. With insurance, which covered the medical expenses they incurred, Dana Lustig says they will have paid close to $40,000 out of pocket.
For Finn, the most awkward part of the pregnancy was dealing with strangers who would ask if it was her first or her second child. “It was almost a decision I would make every time,” she says. “Well, do I tell them it’s mine, or do I go into the whole situation and explain everything? Sometimes, I would just say, ‘Yes, it’s my second. It’s a girl.’”
Finn says she always knew the baby she was carrying belonged to her sister and brother-in-law. “I was not as attached to Grace as I was with my daughter,” she says. But she and Grace will always share a “special bond,” made more meaningful by the Lustigs’ decision to select her and her husband as Grace’s godparents.
Dana Lustig says she would not have considered having Finn act as a traditional surrogate, carrying a baby created with her own egg. She had thought about what it would be like to sit around a future holiday dinner table and wonder if her relatives were looking at Grace and thinking, “That’s Danielle’s daughter.” Or how she would feel if Grace, in a bout of teenage spite, someday blurted out, “Well, you know what? You’re not my mom. Aunt Danielle is.”
“To know that ultimately this was a child that my husband and sister created—that was just too much for us,” Lustig says.
Lustig did want to use an egg donor who would accept contact in the future. And so, whenever she wishes, Grace will be able to reach out to the woman who gave half of the genetic material that made her. “I think my fears are not that she’ll have the desire to meet her,” Lustig says, choosing her words carefully. “Our fears are that the situation would cause her to feel uncertain about her own identity, and feel, I guess, any sadness or confusion in the whole process.”
Grace will know the story of how she came to be, Lustig says. “I’m going to try to make it as normal for her as possible. And she’s got to feel pretty special, you know? All of these people wanted her to be here. Everybody just loves her so much. She’s really just a miracle.”
Infertility affects men and women equally, and it strikes people of
various ages and economic and ethnic backgrounds. In New Jersey and the surrounding region, infertility is more frequently linked to female aging than it is in the rest of the country. (A woman’s fertility begins to decline in her late 20s.) More than 50 percent of patients at Reproductive Medicine Associates of New Jersey are women over the age of 35, says Richard Scott, a founding partner of the clinic. Scott says the state’s typical infertility patients are highly educated and successful couples who focused on their careers before starting families. Infertility diagnoses are more common today, Scott says, “simply because we’re having children later in life than our parents or grandparents did.”
While 40 may be the new 30, women’s reproductive biology does not change with the times as their attitudes do. Women are born with all the eggs they will ever have, and as they age, their eggs decline in quality, making it more likely for them to miscarry or have a baby with a serious medical problem.
Though their biological clocks tick at the same rate as ever, women can buy time today in ways they couldn’t twenty years ago. Young women can freeze embryos created from their eggs and donor sperm; they can also freeze their eggs. Older women can “adopt” another couple’s embryos or use eggs from younger donors.
Egg donation is an involved process, which is why New Jersey clinics offer donors compensation ranging from $5,000 to $8,000. Agencies sometimes offer far more. Among the egg-donor ads that appear regularly in the Daily Princetonian, Princeton University’s student newspaper, one agency recently offered $20,000 plus expenses to a “100 percent Jewish Ashkenazi egg donor” who is younger than 29, has “blue-green eyes,” SAT scores of more than 1300, and is “physically fit and maintaining a healthy lifestyle.”
Another ad promised $35,000 plus expenses: “Ivy League professor and high-tech CEO seek one truly exceptional woman who is attractive, athletic, under the age of 29, GPA 3.5+, SAT 1400+. Thank you for helping create our family.” (Through a spokeswoman, Princeton University President Shirley Tilghman declined to comment on the Daily Princetonian’s egg-donor ads.) New Jersey donors are also solicited in other media and on the website Craigslist.
Local reproductive endocrinologists say that, for ethical reasons, they do not attempt to select for physical and personality traits in the laboratory. Prospective parents, however, sometimes do shop for certain traits. Andrea, a single, 42-year-old nurse from northern New Jersey who asked that her real name not be used, recently became pregnant using an anonymous donor’s egg and sperm from a 30-year-old donor whose profile she says she has gone over “a few million times.” She chose him because he was of German-Norwegian descent, like her, and had other qualities she considered important: athleticism, including a love of skiing; height (he is 6 foot 1); excellent college test scores; and a resemblance, in appearance and personality, to her brothers. “He looked like he could fit in with my family,” Andrea says. “I think I looked for a lot of the same traits in the donor that I did in the people I met in real life.”
Egg donation is also an option for gay couples who want children. Thomas Davis and Geoff Gingerich of South Orange became fathers last November using a donor’s eggs and a gestational carrier. Because they were using Gingerich’s sperm, they sought out an egg donor who shared some of Davis’s qualities, such as his interest in science and his mixed ethnicity: Caucasian and Asian. When they first met with people at the egg-donor program, the coordinator put it succinctly: “She said, ‘Well, you want someone who’s a genius and beautiful, so what else?’” recalls Davis.
Andrea, who was in her first trimester in January, preferred to become pregnant rather than adopt because she wanted to experience pregnancy and be able to control her baby’s prenatal environment. She did not mind having a child who did not share her biology. “My goal is, I want a child,” she says. “The genetic piece of it doesn’t really matter to me.”
The genetic piece did matter to Leah Farbman, a 44-year-old holistic health counselor and occasional waitress from Hudson County who wanted to use her own egg. Farbman got pregnant in her late teens, shortly after graduating from high school, and opted to have an abortion. “It was a heartbreaking decision,” she says, “but I knew I needed to experience life, get mature, and grow up and all that stuff.”
As she turned 40, Farbman found herself reflecting on her failed long-term relationships and childlessness. She had wanted to be a mother since that first aborted pregnancy. “I was mad at myself,” she says. “I should have had that baby…[I asked myself,] ‘You’re 40, what are you doing? It’s not going to happen for you, it’s too late.’”
Two years ago, Farbman reconnected with Carl Renfro, a man she “kept running into” during summer weekends in Toms River. They started dating. Four months later, Farbman began to try to get pregnant. “It just became very apparent that we were supposed to be together,” she says.
Unable to conceive, Farbman first consulted Chinese healers, took a variety of herbs, kept a piece of red coral in her belly button for luck, meditated, and took a fertility yoga class. When that failed to work, she underwent an IVF cycle at the Cooper Center for IVF in Marlton. She had a healthy baby girl on January 24.
Farbman sometimes worries that she put off motherhood too long. “There’s days when I’m like, ‘What did I do?’” she says. “I have such a responsibility to be here long enough to get her really going on her own.” But now that she has her daughter, Farbman says she knows she did the right thing. “I feel like whatever happens has been meant to be. I’ll be 60 when she’s 15, but I’m going to give her all I’ve got.”
Jerome Check, the division head of reproductive endocrinology and infertility at the Cooper Center, has helped women well into their 50s get pregnant. One of his patients was 59-year-old Lauren Cohen of Paramus, who last year experienced life-threatening complications during her pregnancy. In July, she became the oldest woman in the United States to have twins. Created with her husband’s sperm and a donor’s eggs, the boy and girl are named Gregory and Giselle.
Critics have decried some advances in reproductive medicine as unnatural, unethical, and fraught with the potential for harm. Reproductive endocrinologists counter that infertility is a disease, and those who suffer from it should be helped. “What is natural?” asks Susan Treiser, co-founder of IVF New Jersey, at the clinic’s Somerset office. “It’s natural to die of heart disease, and we fix hearts. It’s natural to suffer from renal failure, and we fix kidneys. We’re just using modern technology, as we would in other aspects of medicine, to have children.”
Until recently, infertility treatments were available only to those with deep pockets. Treatment became more affordable for many New Jerseyans in 2001 with the signing into law of the New Jersey Family Building Act, which requires companies with 50 or more employees to cover infertility treatments as part of their health insurance packages. (Less than one-third of states have passed similar legislation.) The insurance mandate is one reason that treatments for infertility are becoming “grocery store conversation” in the state, in the words of one patient. For some, though, infertility still carries a stigma. Many of the people interviewed for this article asked that their real names not be used. One of them was Christina, who has not told her closest family members or friends that she is seeking treatment.
An athletic 30-year-old from Hunterdon County, Christina was jolted by her infertility diagnosis—especially since she and her husband easily conceived their first child, a girl who is now four and a half.
Christina’s mother babysits for her granddaughter on the mornings that Christina goes to IRMS for procedures such as blood work and tests, but even she does not know the full story. “I guess in the beginning it’s kind of like embarrassment,” Christina explains. “I know that sounds horrible, and I don’t mean to offend anyone who’s going through it. I just felt like a freak. I couldn’t put it out there that something was really wrong with me. I was embarrassed about it. I just figured the less people that know, the better.”
Christina is also Roman Catholic, and the Vatican is opposed to egg and sperm donation, IVF, and other “techniques of artificial procreation,” in the words of a March 1987 Vatican document that condemns such procedures on moral grounds. Christina says her faith influences some of her decisions; for example, she says she would never choose to donate unused embryos for stem cell research. She rationalizes her use of reproductive technology this way: “God put me in this position, and He gave me the brains and the means to use the resources out there to try to overcome it. If it’s not meant to be, it won’t work.”
John Garrisi is both a Catholic and a reproductive endocrinologist. At the Institute for Reproductive Medicine and Science, of which he is co-founder and laboratory director, Garrisi selects viable eggs to match with healthy-looking sperm from a woman’s partner or donor. The element of randomness in this selection process, in which Garrisi effectively determines the genetic makeup of a child, is not lost on him—nor is it lost on the numerous critics who have in recent years accused scientists like him of playing God.
There are some well-defined limits to his work. The clinic generally does not participate in sex selection; rather, Garrisi chooses to “put back” into a woman’s body the most healthy-looking embryos, without regard to sex. (In rare cases, if there are several embryos equal in quality, the patient may be given a choice.)
Garrisi says he does not dwell much on the decisions he makes; after all, he can’t tell “which of those embryos is the athlete and which is the thinker.” But, he says, “I have inserted myself in the process of procreation. I’d prefer not to be there. I want to help nature do what it can do, but I don’t want to change the course.”
At times, more embryos are created in the laboratory than can be used. At Garrisi’s clinic and others around the state, these embryos belong to the patient, who can freeze them for future use, discard them, donate them to another couple, or donate them to an institution where they will be used for research. Garrisi has seen people struggle with these options. “Not too long ago, we had a patient come in to sign to discard her frozen embryos, and she was crying,” he says.
Specialists like Garrisi now have the ability to look for certain genetic or chromosomal defects before implanting an embryo in a woman. Using a very early prenatal test called Preimplantation Genetic Diagnosis (PGD), they can detect abnormalities in an embryo such as the existence of the extra 21st chromosome associated with Down syndrome. The test is available only to people who conceive via IVF; because of it, says Richard Scott of Reproductive Medicine Associates, diseases such as Down syndrome will no longer exist within his lifetime—at least among the offspring of infertile couples. Clinics are using PGD, Scott says, “to level the playing field.”
One of the most noticeable effects of the increased number of people being treated for infertility in New Jersey has been the rise in the state’s population of twins, triplets, and high-order multiples. Multiple births are linked to ART procedures such as IVF, in which two or more embryos are sometimes implanted in a woman to give her a greater chance of having a baby. They are also caused by non-ART therapies, such as ovulation-inducing drugs, which are often used in combination with artificial insemination. Maternal age also has an effect: older women are more likely to conceive multiples naturally.
A multiple pregnancy is risky because the mother seldom carries it to term; the babies are more likely to be born prematurely, have low birth weights, and suffer from significant health problems. Still, when one IVF cycle costs $12,400 on average, multiples can seem like a bargain.
Because gay couples are not covered under the 2001 insurance mandate, Davis and Gingerich of South Orange paid about $70,000 out of pocket for one IVF cycle using Gingerich’s sperm, a donor’s egg, and a gestational carrier. Two embryos were implanted into the carrier, a married mother of four named Jen to whom the men paid $25,000. Both embryos developed into healthy babies. “We didn’t think we could do this again financially, at least not in the near term, and we preferred the baby have a sibling of some sort,” says Davis. “So having twins is just perfect. And we’re first-time parents, so we didn’t know any difference in terms of extra work.”
Adoption had worried Davis, a 44-year-old scientist, and Gingerich, a 34-year-old teacher, because birth parents are able to take back a child within a window of time—72 hours in New Jersey—and they could not imagine having to return a child they had already begun to bond with. Melissa Brisman, the reproductive rights lawyer they consulted, told them a gestational carrier had never successfully challenged a baby’s intended parents in court.
Brisman’s Park Ridge office connected them with their carrier, Jen, who did not want her last name to be included in this story. Davis and Gingerich met Jen, her husband, and the couple’s four boys for dinner one night. While everyone “hit it off right away,” Gingerich says, “one of the things we talked about at dinner was how weird this whole thing was. We all thought it was strange.”
Davis and Gingerich are now the parents of two boys, Angus and Duncan, who turned one in November. The twins have very different coloring—Angus has blond hair and light skin, while Duncan has brown hair and olive skin. The men are thrilled with their new family. “It was really difficult to adjust, especially in those first couple of months,” says Gingerich. “It was just work all the time. Now it’s so rewarding, when they finally notice you and pay attention to you. They are becoming little people. It really is the greatest thing.”
The men count themselves lucky to have had success during their first and only IVF cycle. Infertility treatments come with no guarantees, and for many, they don’t work once, twice, or at all. Sue Slotnick of Short Hills, a member of the board of directors of RESOLVE, a national advocacy group for people affected by infertility, says she and her husband chose to remain childless after pursuing treatment.
Slotnick learned after marrying her husband that he was azoospermic, meaning his semen contains no sperm. After going through three failed inseminations with donor sperm, Slotnick saw a reproductive endocrinologist and learned, to her surprise, that she had fibroid tumors in her uterus. She underwent surgery and then tried one cycle of IVF, which didn’t take. She and her husband looked into adopting but decided against it.
“I felt I had given it my all. I did everything I could have done, and it didn’t work for me,” Slotnick says. After going through therapy and speaking with counselors from RESOLVE, “we realized we were very comfortable being a family of two.”
Julie, a 39-year-old Morris County resident who asked that her real name not be used, underwent six IVF cycles. Four of them failed. In the midst of three consecutive unsuccessful cycles after the birth of her son, who is now six, Julie would see women in maternity clothes and be reminded that she had no control over whether she would get pregnant again. She says she was frustrated that childbearing, something so many couples did effortlessly, required so much work for her and her husband. “I no longer look at our power to decide whether to have more kids as completely ours,” Julie says. “The power we have is to choose to [undergo an IVF] cycle. But the power of having it work is not completely ours.”
Julie, once needle-phobic, became so obsessed with having children through IVF that “the needles became nothing.” In her sixth cycle, she became pregnant with twins, a boy and a girl. In February, the twins turned three.
If the thousands of children who have been born with the aid of reproductive medicine over the years have one thing in common, it is love. These babies are never accidents—their births are meticulously scripted, their lives eagerly anticipated by a parent or parents.
Julie and her husband are just starting to tell their older son how his birth was special, requiring extra medical intervention. Julie says she talks to him about it at night sometimes, when they are in bed together reading. “I’ll tell him, ‘Do you have any idea how much we wanted you?’” she says. “And he’s like, ‘A lot?’ And I’m like, ‘More than you can ever imagine we wanted you, we just so wanted you.’ And I describe the day he was born, what he looked like, and how I looked into his eyes and he was just the greatest thing, and I was in love.”