The Girl With The Golden Eggs
REMOVED THE EXCERPT | ERIK REYNA -->
A radio version of this story, “The Diary of an Egg Donor,” aired on KALW in San Francisco. Listen here.
Hidden risks in the fertility industry
By Teresa Chin
Angela Rogers, 27, grabs a box of syringes and a bright red biohazard container from the refrigerator. For the next 10 minutes, as we kneel on the cold kitchen tile, Angela shows me the tools of her trade—adjustable-dosage injection pens, stacks of alcohol swabs, and tiny glass bottles of drugs with vaguely feminine-sounding names: Lupron, Follistim, Menopur.
She then shows me a calendar listing her medications and doctor’s appointments for the next month—roughly one ultrasound or blood draw a week, plus daily injections. Angela scans for today’s date, and then reaches for the necessary pharmaceutical box, next to a carton of orange juice. “Yay,” she says, rising to her feet and selecting a fresh syringe. She brushes the dust off her tights. “Thank goodness it’s only a Lupron day.” This is about the time I realize I don’t have a clue what it means to be an egg donor.
As I begin my search for more information, I find the two government agencies you would expect to oversee this medical field are strangely absent. The Food and Drug Administration vets the vast majority of medical devices and pharmaceuticals, but has allowed doctors to freely prescribe fertility drugs to women in high doses that have never been tested (at least not for this purpose). At the same time, the Centers for Disease Control and Prevention, the agency in charge of collecting health and epidemiological data, is not recording the ages of donors, how many times they donate, or the subsequent impacts to their health and fertility. No regulatory body can even say exactly how many women have contributed to the egg market. Despite this lack of information, thousands of women a year are still willing to offer up their ovaries.
Including me. Maybe. That’s what I’m trying to decide.
I’m learning about the process by observing Angela, whose mother has nicknamed her the Goose With the Golden Eggs. At first it seems a fitting title, given her perfect production record, though I begin to find it unnerving that she’s being likened to a fabled character that is ultimately sacrificed. Angela shrugs it off. We are different in many ways, including our relationships with those who want our genes. Angela has met the future recipient of her eggs only once, and will likely never see her again. In my case, the potential parent is my best friend, Matt Fellows, who recently called to ask me to help him and his partner start a family.
Matt and I shared a room in college during our formative post-teenage years (my father joked he was fine with it as long as I was “really sure” Matt was gay) and forged a lasting friendship. He had already begun calling me his “future egg donor” by the time we graduated. Back then it seemed more like a joke than a promise.
I went to Berkeley, to graduate school. Matt went to Philadelphia, to medical school. He met Chris. They fell in love. They started talking about kids. That’s when Matt told him, “Well, I kinda sorta have an egg donor.”
At 7:30 p.m. sharp, I follow Angela into her dining room. She pulls off her gray tights.
Both thighs are covered in bruises. The quarter-sized purple splotches show where she has been injecting the hormones. She shows me how to pinch the fat, to give yourself a better target, and explains how you try not to aim for a vein, but you sometimes accidentally hit one, which causes the bruising, but it’s okay because it’s just a little blood, and the needle is so small you barely feel it. Angela removes the now-empty syringe from her right leg and deposits it into the biohazard container.
“Don’t worry,” she tells me, pressing a cold alcohol wipe to the tiny puncture wound. “You get used to it.”
Let’s forget the hormones and the needles for a moment. When Matt and Chris asked me to help them have a baby, the first thought that popped into my head was, that’s a pretty damn flattering request.
Here are two people who think highly enough of me to want to make a baby with me—a baby who might have my eyes, my hair, my smarts, maybe some of my quirks. Here are two people who believe there should be more of me in the world, an idea that appeals to me in some deep-rooted Darwinian way. What does this say about me?
What does this say about me? That’s my next thought. What will it mean to be a mother but not a mother? What will the kid call me? How will my relationship with him or her compare to that of the fathers’ relationships with the child? Or to that of the surrogate who will give birth to the baby? Will I tell my parents? Will people judge me?
And then there’s the money, of course. I think of the ads I’ve seen online and in the school newspaper, promising $5,000, $10,000, even $50,000 to young women like me. But I’m not doing this for the money, and I wouldn’t do this just for money, and now that I think about it, no one has said anything about money.
I look at the caring person asking for my eggs, and I think of all the late-night phone calls, the breakups and bitch sessions, the weddings and funerals and medical emergencies we’ve shared over a decade of friendship. I think of the ring I helped him pick out to propose to his 36-year-old boyfriend and of what great parents they will be. I think about how this is a person who would take a bullet for me, and how he’s not asking for a kidney or anything like that, just a couple dozen cells I’m not using anyway. I understand the desire to have biological children, and smile to think this is a gift I have the ability to give my best friend. I realize I want to do this, almost as badly as he does.
But then I think about my body. And my fear of needles. I think about the short-term discomfort, and the long-term uncertainty, and the fact that, at 29, I don’t have any babies of my own yet.
So I stall.
“I need more information, Matt,” I say. “It’s just a formality, but give me some time to do some research, okay?”
Waiting to meet Angela for the first time, at a coffeehouse near her home in Portland, Oregon, I wonder what she will be like. All I know is that, at least on paper, Angela is an ideal donor: young, educated, healthy, and with ovaries set on extra-fertile. In less than three years, she has completed five cycles with more than 100 percent success. Five recipient pregnancies, seven biological children. Her current bequest, which she started a few weeks earlier, will be her final one—the American Society for Reproductive Medicine (ASRM), a professional advocacy organization that also acts as an advisory body to the fertility industry, recommends women limit themselves to six cycles (representatives from the organization couldn’t explain how it arrived at this number and offered no studies to support the guideline).
I order a large black coffee and keep an eye on the door for anyone who might fit the description of the golden-egged goose: white, 27 years old, 5 foot 6, 125 pounds, blue eyes, and brown hair. The plan is to tag along for today’s blood draw and an ultrasound that will allow both me and her current recipient, a 47-year-old single marine biologist, to get a better idea of how things are progressing in Angela’s ovaries. Like many women in her situation, the marine biologist delayed childbearing past her fertile years, but now wants to become a mother. She chose Angela based on her perfect record (a.k.a. golden goose status) and a single in-person interview. Clearly, Angela is a woman who makes a good impression.
Then I see her. Orange sweater dress, jaw-length bob, and the biggest blue eyes I’ve seen outside of a Disney movie. I can see how her beauty has made her a desirable donor, considering we live in a world where light skin and blue eyes command a premium. We exchange introductions. I ask if she wants anything before we take off. “No coffee,” she says. “I’m not sure, but I think it’s in my contract that I’m not supposed to drink caffeine. Better safe than sorry.”
Angela was 24 and in graduate school when she came across an ad in the Craigslist job postings that offered $7,000 in return for her DNA. But first she had to pass a screening. “It’s like a dating website, only with more questions about cancer,” Angela says. A large egg-broker agency may receive up to 500 applications a week, but the vast majority—80 to 90 percent—never makes it past the online questionnaire. The reasons for rejection vary. Some applicants are too heavy (overweight donors can have more health problems or produce lower-quality eggs). Some have a history of hereditary diseases. Some are not educated (many clinics now require a college degree). Some are not attractive enough. There are no official requirements about physical appearance, but it’s no secret that most couples want good-looking benefactors. The ability to handpick your offspring’s genetics may help explain why, even though roughly 20,000 babies are made available for adoption in the US every year, many people opt for eggs instead. A couple of weeks after submitting her information, Angela received a call. A couple had selected her. At that point, a San Francisco clinic flew her down for additional tests—blood type, Rh incompatibility, HIV, hepatitis, syphilis, drug use, chlamydia, gonorrhea. Angela’s clinic also required her to go through a psychological screening with a marriage and family therapist.
“The scariest thing about being a donor is that they still don’t know the long-term effects of a lot of these drugs that are going into our systems.”
There’s no federal requirement that Angela go through counseling—in fact, beyond the FDA-mandated tests that have to be done when any type of human tissue is transferred from one person to another, there are no laws governing egg transfers. The majority of clinics follow recommendations from the ASRM, which include mentally preparing donors for what’s to come. That is a marked contrast to what sperm donors go through. A guy just needs to have a healthy background, a high sperm count, and a willingness to provide regular samples. Providing gametes via masturbation is a lot less risky—and not nearly as lucrative.
Despite the substantial paychecks they hand out, clinics make an effort to frame their contributors as “angels,” women who are motivated by altruism rather than monetary incentive. Ask most, though, and they’ll say that although they genuinely care about helping, they wouldn’t give their eggs away without the money. This proves to be true in countries that have imposed compensation limits and as a result face donor shortages. It seems it would be more honest if everyone involved admitted that women are selling, not donating, their eggs.
For Angela, the transaction is perceived as something between a gift and a job. She recalls her initial confusion when she received a 1099 tax form from the fertility clinic. “They always told me it was a ‘donation,’ so I didn’t know at first that I would need to pay taxes on the fee,” she says. But now on her Facebook profile she lists the clinic as one of her employers (position: egg donor). Over her past five cycles, Angela has made close to $35,000, which has gone toward paying off credit card debt, financing her wedding and honeymoon, and taking a chunk out of her student loans.
“Naturally, the money is nothing to sneeze at,” Angela says as we pull up to a red brick medical building. “But donating my eggs means so much more than that. It’s been a huge part of my life for the last few years. Now that I’m on my last cycle, I almost feel like I’m losing part of my identity.”
Once inside, we are ushered into a small examination room, where Angela replaces the bottom half of her clothes with a paper sheet. The doctor arrives shortly thereafter, rolling out a portable video display monitor attached to the transvaginal ultrasound wand, a phallic-looking plastic device roughly the same size and shape as turkey baster. The wand disappears underneath the sheet, and soon a fuzzy gray picture on the screen reveals a white oval—one of her ovaries—filled with about a dozen small black dots.
There are many names for these dots in the fertility world—eggs, follicles, oocytes. But whatever you call them is not nearly as important as how many there are. Too few at this stage can mean the hormones aren’t working. Too many can be a sign of ovarian hyperstimulation syndrome. The doctor takes her time, angling the wand to get a clearer picture of both ovaries while silently mouthing numbers. Nineteen. Twenty. Twenty-one. Twenty-two. That’s a lot. But, “You’re in good shape,” she says.
During her first cycle, Angela developed 33 follicles and mild ovarian hyperstimulation syndrome, gaining more than 10 pounds over just a few days. She had difficulty walking short distances, felt weak, and, eventually, ended up in the emergency room, where she was given IV fluids and put under observation. After a few days, her ovaries shrank back to normal.
Angela was shaken but relieved. The pain had been considerable, though it faded once she was properly hydrated. The fertility clinic promptly paid the medical bills. The doctors there assured her it would be better next time. Ovarian hyperstimulation is more of a risk with first-timers. Or so they said.
The incident had given her family a scare, and her body had been sore for weeks after the egg-retrieval surgery. So when the clinic asked if she would like to remain in their database, Angela’s first instinct was to say no—until she got word that her recipient had successfully gotten pregnant. “It surprised me how happy I felt when I found out,” Angela says.
Angela decided to stay in the database. A few months later she got another request. Then a third. A fourth. A fifth. And a sixth.
On the drive home, I continue to quiz Angela on the routine. The needles? No big deal. The nurses? Always super sweet. The weight gain? Annoying but temporary. It was everything I wanted to hear. Angela made becoming a donor seem not only doable but exciting. The inconvenience seemed absolutely worth it to give my best friend a chance to be a father. As a friend, I was ready to say yes.
Yet my intellectual side was saying I can’t leave it here. I know this isn’t the whole story, and I wonder if Angela does. Is there anything, I ask her, that makes you nervous about this whole thing? She hesitates. A few long seconds later, she takes a deep breath. “The scariest thing about being a donor is that they still don’t know the long-term effects of a lot of these drugs that are going into our systems,” Angela says. “Like maybe in 10 years, a bunch of donors are going to get cancer, but how are we going to know about that when they don’t keep track of us? It makes me feel a little bit like I’m a guinea pig.”
“You knew that, and you still did it?” I ask. Angela nods. For the next few minutes, we sit in silence.
I’m no newcomer when it comes to reproductive medicine. I’m a former sexual health columnist with a master’s degree in maternal and child health. I’m used to navigating scientific studies and using phrases like “transvaginal ultrasound.” So I did my homework, relentlessly surveying the medical literature for data about the side effects of fertility drugs. But as Angela said, there isn’t much. It’s astounding, but there hasn’t been a single large, long-term cohort study of former donors.
Assisted reproduction is still a relatively new medical practice—just slightly older than the average donor. The first successful human pregnancy via transferred eggs was reported in 1983. Over the past 10 years, the success rates for such pregnancies have skyrocketed from a meager 10 percent to between 50 and 70 percent.
Biologically speaking, egg donation is simply the female version of sperm donation. In practice, however, the two are very different. “You can’t just give women a cup and tell them, please put your eggs here,” says Aimee Eyvazzadeh, a reproductive endocrinologist who works with both donors and recipients. “Finding a sperm donor is like getting a date on Match.com,” Eyvazzadeh says. “It’s not so easy for women.”
As I learn more about what my body would go through as an egg donor, I begin to grasp what she means. We start life with all the egg cells we’ll ever have, stored away in our ovaries. Women release their gametes (reproductive cells) internally when, each month, they drop into the uterus for fertilization. In assisted reproduction, they have to be surgically plucked from the surface of the ovaries by going past the uterus and up the fallopian tubes.
Normally only one egg will mature each month. But egg donors are given hormones to trick their bodies into producing additional mature eggs, which translates into more chances for the recipient to get pregnant.
Each hormone has a different role. Lupron, for example, halts the normal female reproductive cycle so other drugs, like Follistim and Menopur, can manipulate it to produce more eggs. The FDA has approved Lupron, but only for treating men with prostate cancer. The off-label use on women is technically legal; however, the long-term effects under these circumstances with these doses have not been studied by the regulatory agency, the pharmaceutical company that produces the drug, or the fertility doctors who prescribe it to donors.
But there’s no doubt the drugs are effective. With their aid, a single cycle will usually yield 10 to 12 eggs, and, occasionally, many more—up to 30 or 40. “It’s really a numbers game,” Eyvazzadeh says: more drugs, more eggs, higher pregnancy rates.
Donors aren’t at risk for running out of eggs, but some medical professionals have linked the use of fertility hormones to an increased risk of ovarian cancer. Several studies based outside the US found that women who underwent in vitro fertilization, which requires the same hormone cocktail, had twice the rate of ovarian cancer as those who didn’t. Still, the exact implications are unknown.
The medical community does recognize there is an acute risk for ovarian hyperstimulation syndrome, a potentially life-threatening condition during which the abdominal cavity and ovaries fill with fluid after egg retrieval. According to the ASRM, which represents more than 90 percent of the country’s clinics, up to 30 percent of women who take fertility hormones will develop at least what’s considered a mild case. Though “mild” hyperstimulation can leave you bedridden for more than a week and be very painful, over time the symptoms will resolve themselves. Moderate complications may require surgery and cause permanent damage to one or both ovaries. Severe hyperstimulation has led, in rare cases, to death. Being young and thin, characteristics of the typical donor, creates an even higher risk of developing the syndrome.
Still, fertility physicians say these procedures are longstanding and, for the most part, seem to be safe. “On the one hand, we’re almost 30 years into egg donation technology, which is reassuring in many ways,” says Dr. Linda Giudice, the current president of the ASRM. But Giudice, who is also the chair of UC San Francisco’s Department of Obstetrics and Gynecology, acknowledges, “On the other hand, we still need long-term data on [these hormones] and fertility and reproductive cancers.”
Despite the fact that the industry is estimated to generate more than $4 billion in gross revenue this year, Giudice argues that it’s not up to clinics to fund research on egg donors. “If the government wants to fund more studies, we support that,” echoes Sean Tipton, the organization’s director of public affairs.
Since the 1970s, when the first successful in vitro fertilization took place, the concept of interfering with genetic motherhood and the potential legal complications of egg transfers has made academic and government research funders avoidant. Cut off from traditional grant sources, the fertility industry sought financial investments from the business sector. This set the scene for the American fertility business to become the Wild West of medicine—innovative, unrestrained, and driven by profit. With the industry lobbying hard and politicians from both sides of the aisle cowering from any legislation that might be bound to women’s reproductive rights, a topic that arouses culture warriors from feminists to tea partiers, nothing is likely to change.
While the government, academia, and industry pass the buck, the business of buying and selling gametes only continues to grow, as more women are waiting until later in life to start families and more young women see this as a cash-making opportunity. But without reliable data chronicling the risks, donors can’t give informed consent. These concerns have prompted several women’s health advocates to speak out against egg donation. “We are supposed to think carefully about the risk/benefit ratio when making decisions,” says Judy Norsigian, author of the landmark book on women’s health and sexuality Our Bodies, Ourselves. While Norsigian is firmly pro-choice, she says the business of egg donation is unethical because of the lack of reliable science. “How can we weigh the case of egg donation when no one knows what sort of risk we’re talking about for egg donors?” she asks.
Here’s the obvious reality: I don’t need a big health study to tell me this is not a zero-risk game. No medical procedure, however innocuous it seems, is 100 percent safe. I always knew I would have to take on some risk. The question is how much?
On the one hand, I’m well prepared to cope with some aspects of egg donation. The concept of another copy of my genes floating around out there is something I’ve grown up with, because I’m an identical twin. If my sister has children, they will have just as much DNA in common with me as with her, so I probably will have to deal with that situation one way or another. I also don’t have any moral or religious objections to assisted reproductive technologies. And Matt and I align when it comes to discussing my involvement in our hypothetical kid’s life.
But after confronting the lack of information time and time again, I begin to feel a rift in our solidarity. If this could do horrible things to my body, how could my best friend expect me to risk that? My guilt over taking so long to give him an answer is momentarily replaced by overwhelming resentment. Here I am, the type of person who has never even smoked a cigarette for fear of getting lung cancer, and yet I am considering doing something that, for all anyone knows, could give me breast cancer, decrease my chance of having my own children, or cause my ovaries to rupture.
On the days I lean toward saying yes, I feel like a public health hypocrite. On the days I nearly say no, I feel like a terrible friend. I find myself ignoring phone calls from Matt. I’m afraid of saying something I’ll regret. After Angela’s operation, I tell myself, that’s when I’ll know. I just need to see the entire process from start to finish.
Two days before her surgery, Angela and her husband board a plane from Portland to San Francisco. When I visit her hotel room the next day, she greets me without getting out of bed. Her pants are unbuttoned to make room for her swollen abdomen. The last stages of the process are always the hardest, she says.
I am struck by how much Angela has changed. It isn’t just the newfound roundness of her midsection, which is still slender by any stretch of the imagination. She doesn’t get overly emotional like some donors, she says, but feels tired, bloated, and hazy.
The next morning at the clinic, the nurses greet and immediately usher Angela to the operating room. The procedure is a short one—only 20 to 30 minutes—but still requires general anesthesia. Once Angela is under, the surgeon aspirates all of her mature eggs, sucking them through the end of a long, thin needle attached to a vaginal ultrasound wand. These eggs will be fertilized outside the donor’s body, and the healthiest embryoes transferred to the recipient.
Forty minutes later, the doctors have retrieved 27 eggs, more than they had originally expected. But we can’t talk too loudly about numbers in the recovery room. “One of the other girls who came in for her retrieval today went through her whole cycle, but they weren’t able to get any,” Angela whispers. “Putting your body through all that for nothing, I can’t imagine how that would feel.” It’s estimated that 20 percent of cycles don’t result in egg retrieval. That figure includes women who don’t follow through with the entire process, but more commonly it’s because no eggs are produced in the end.
An administrative assistant comes into the room. She congratulates Angela, still clad in a paper hospital gown, then hands her a check for $7,500 and a large wicker basket from Angela’s recipient. Inside are a few bottles of coconut water, a handmade wooden journal, a gift certificate to a local restaurant, and an iPad.
The Goose With the Golden Eggs has done it again.
As far as the fertility doctors are concerned, this is where Angela’s story ends. Clinics don’t have to report anything to the CDC beyond the fact that their donors have completed a successful transfer. Once the eggs have been salvaged, the attention completely shifts from donor to recipient, and women like Angela slip from the purview of medical records and back into their everyday lives. But the transition doesn’t always go smoothly.
A week after the surgery, I come across a picture on Angela’s Facebook page. It’s of her torso. She is grossly swollen. Her belly protrudes past her breasts, as if she were four or five months pregnant. I swallow hard and dial her number. When she answers, her voice is flat. She is in the hospital.
After returning to Portland two days after the surgery, her belly kept expanding. When the edema got to the point that she could no longer put on shoes, Angela called her doctor, who told her she was again showing signs of ovarian hyperstimulation. She advised Angela to go to the emergency room immediately.
Angela spends the night under observation, only this time she isn’t recovering. She becomes even more bloated. She has trouble breathing. The emergency room doctors don’t have much experience with her condition, so the next day she goes to a fertility specialist, who does an ultrasound. Her ovaries are the size of grapefruits. Fluid is leaking out, putting pressure on her lungs and other organs. Angela needs emergency surgery. She may lose one or both ovaries. “That’s when the seriousness of it hit me,” Angela says. “What if this ruins my ability to have children? What if I do lose my ovaries because of this? What if this is giving me permanent damage? We don’t know. No one knows.”
In the surgery, Angela’s fertility specialist inserts a large hollow needle through her cervix to draw out the excess fluid. Unlike the prior one, this procedure has to be done without anesthesia. Angela is awake the entire time. And it hurts. The doctor removes nearly two liters of fluid. There is still quite a bit left inside. With luck, she is told, her body will absorb the rest, and her ovaries will return to normal after her next menstrual cycle.
The whole thing hits me pretty hard. I try to recall Angela’s initial enthusiasm and the fawning she had received at the clinic, but those memories pale in comparison to the current image of her frighteningly distended abdomen. All of the specialists I had talked to said side effects are rare. But I now realize the term “rare” is meaningless—it could mean 1 percent, maybe 10 percent, maybe much more. With different clinics and countries using different drugs and doses on egg donors, the little data that exists means nothing. Without a nationwide protocol, a US tracking system, and reliable cohort study, there is no way to put any of it into context.
Weeks pass before I hear from Angela again. By this point, she is feeling better and has just received exciting news. Her latest recipient, the 47-year-old marine biologist, is pregnant. Angela is six for six, a golden record. She sounds happy. It is almost as though she has forgotten the events of the past few weeks. But I can’t forget.
So I finally call Matt. I tell him Angela’s entire story. I tell him that as much as I love him, I can’t take on a risk I have no way of fully understanding. There is a long pause on the line. I wait to find out if the crack in our friendship will break us completely apart.