3:26pm

Wed January 25, 2012
Health, Science, Environment

The diary of an egg donor

As a growing number of American women delay childbearing into their thirties and forties, the use of assisted reproductive technology such as in vitro fertilization, sperm banks, and egg donation has gone through the roof. In the growing world of egg donation, there’s a lucrative market for healthy young ovaries – not to mention the emotional value to infertile couples.

To young women looking to do good – and make a few thousand dollars – egg donation is an attractive idea. But not much is known about the procedure’s long-term health effects. With this intimate look, reporter Teresa Chin takes us inside the American egg trade.

TERESA CHIN: Angela Rogers is a tall, attractive 27-year-old, with short brown hair and the kind of wide blue eyes you usually only see in Disney movies.  She recently graduated with a Masters degree in marriage and family therapy, and lives in a small house in Portland, Oregon with her husband, Steven, who’s also finishing school.  But Angela – AJ to her friends – has another life too. In her cozy, colorful kitchen, she gives me a brief lesson in the tools of her trade: refrigerated alcohol wipes, bottles of drugs with vaguely feminine-sounding name and a set of medical syringes with slender plastic bodies and fine, half-inch needles.

AJ: And my biohazard container – that’s fun to travel with.

When she injects herself with these needles each day, AJ joins thousands of young, healthy, fertile women across the country doing the same thing. They’re voluntarily pumping themselves full of hormones, enduring intimate prodding and poking, and eventually, undergoing minor surgery – all for the explicit purpose of helping a complete stranger have a baby. The reasons why are not always straightforward: maybe it’s altruism, or maybe it’s empathy, or maybe it’s the $5-10,000 paycheck that comes with most donation cycles. But what is clear is that more and more women are signing up to share their ovaries.

Including me. Maybe.

It all started a few months ago, when I got a call from my best friend, Matt Fellows. He wanted to tell me that he and his long-term boyfriend, Chris, were thinking about having kids. My first thought was, “That’s awesome.” Matt and I have been best friends since college. I adore the two of them, and there’s no doubt in my mind that they’d make fantastic parents. My second thought, though, was something like: Oh shit. I guess it’s finally time for us to have this conversation. I called Matt recently to talk about it.

TERESA: I’m trying to think how this came up. I don’t remember exactly when we started joking about me being your egg donor.

MATT: It was definitely after we started living together. I don’t remember exactly when we started talking about it probably because at that time, it was, I don’t want to say a joke, but so far away as a possibility it didn’t see real.

TERESA: I remember sometimes we would say goodbye and you would give me a big hug, and then you would give me a pat on my belly and you would say…

MATT: “…Yeah, protect those ovaries!” (laughs) I don’t want to say it was ever a joke, it was more like, “Gosh, maybe this is something that someday would happen.”

TERESA: And it’s funny now that we’re talking about this because I feel like all of a sudden we stopped joking.

MATT: Yeah, it was kind of a sudden transition. I became in a stable, long-term relationship where all of a sudden we’re talking about the possibility of having children together, and the next question comes up: Well how are we going to have children together? And I said, “Well I kinda sorta have an egg donor.”

Kinda sorta. Maybe it was never exactly a joke, but until that moment I had never given the idea of egg donation any serious thought. Once I started, I realized there’s a lot to think about.

On the one hand, it’s a cool concept. Here’s a person, you say to yourself, who thinks highly enough of you to want to make babies together – babies who might have your eyes, your hair, your quirks. And sure it’s going to require a little discomfort, but it’s not like we’re talking about a kidney – just a couple of dozen cells you’re not using anyway. So, why not do it?

But then you think about yourself. And your body. You’re 29 years old, and you don’t have any babies of your own yet. You think about the short-term discomfort, and the long-term risks. You think about the needles.

Back in Portland, I watch AJ as she does her nightly hormone injections.

AJ: So I just pinch up some of my fat here on my thigh, try to avoid the same place I shot into recently so I don’t get too bruised up. And just release the pinch and pull it out.

TERESA: Did that hurt?

AJ: Nope.

AJ makes it look easy. But then again, she’s kind of a pro. This is AJ’S sixth time donating her eggs. That’s the maximum clinics recommend a woman go through any fertility cycle. And she’s done it all within the last three years. It’s pretty amazing, considering what the donation process involves.

Here’s how it works: Every month, a typical woman releases one mature follicle – that’s another word for egg cell – from her ovary. That’s when her body has a chance to get pregnant.

But with egg donation, that same woman can take a combination of hormones that cause her body to produce lots of mature follicles: Usually between 10 and 12, but sometimes as many as 30 or 40. Doctors retrieve these cells surgically, fertilize them, then implant them into the mom-to-be.

Now, if you’re the one getting them, making more mature follicles is a good thing because it means more chances for mom to get pregnant. But if you’re the one giving the eggs, the process is kind of hard on your body. So you don’t want to produce more than 25 or so. Above that number, donors run the risk of what’s called ovarian hyperstimulation syndrome, meaning the ovaries don’t shut down properly and can swell and leak fluid into your body.

It seems like a lot, but 25 eggs don’t stretch as far as you might think. Only a fraction will be healthy enough to get fertilized, and even fewer will go on to develop into usable embryos. In the end, the majority of donor cycles don’t result in a pregnancy.

Yet in AJ’s case, every woman she has donated to has conceived and carried the babies to term, including two sets of twins. It’s a feat that’s earned her a reputation for success at the clinic, including a new nickname.

AJ: That’s what the doctor says – I was their superstar. The goose with the golden eggs.

Two weeks before her egg retrieval surgery, AJ lets me tag along on her medical appointments.

AJ: So the plan for today is to first drive to Oregon Reproductive Medicine, which is in North West Portland to get my ultrasound and blood drawn. Make sure everything is looking good, that I don’t have any cysts and everything.

We arrive at a red brick medical building in a nice area in Portland. AJ has been here before, but it’s the first time I’ve ever visited a fertility clinic.

TERESA: This is the nicest doctor’s office I have ever been in.

AJ: I know, it’s like, swanky. I think fertility is a lot of money. Like the procedures are very expensive and people are willing to pay a lot

There is a lot of money in this industry. Women trying to get pregnant with donor eggs typically spend around $30,000 per attempt. Egg donors themselves are paid only a fraction of these fees: about $7,000 for six weeks of work plus recovery time. Repeat donors like AJ can earn slightly more per cycle – about $7,500. But most clinics say money isn’t supposed to be the point. And AJ agrees.

AJ: Helping people feels really, really good. Like, while I’m in the process, gives me a really strong sense of purpose and responsibility. Like a good kind of responsibility. So why not do it as many times as I can?

Which isn’t to say the money can’t be helpful.

AJ: Oh yeah, well, the very first one I used to pay off a credit card I had in college, and that was awesome. I was able to just cut that up and pay it down and really freeing feeling. The second and third ones I used to pay for our wedding and honeymoon.

And AJ isn’t alone. A high percentage of egg donors are students trying to pay off their loans. The American Society of Reproductive Medicine officially discourages fertility agencies from recruiting on college campuses – the thinking is that there is too much pressure on students to pay back loans, and they might be too eager to overlook the risks associated with egg donation. But back at the clinic waiting room, I see a number of young women in college sweatshirts. I can guess why they’re here. Like AJ, they sit quietly and flip through magazines as they wait for their names to be called.

There’s also a definite air of secrecy around egg donation, and it’s not just in the clinic. Many egg donors don’t even tell their families about their procedures. Some families who have gotten pregnant with donor eggs don’t tell their kids. As a person trying to decide whether or not to be an egg donor, it drives me a little crazy that not many people are open to talking about this. Except AJ, of course.

The first time AJ donated her eggs, she gave 33. Too many. She hyperstimulated. Her ovaries swelled, and she had to go to the hospital to get rehydrated and prevent infection. She wasn’t going to donate again, but then she found out her recipient got pregnant with her eggs. A few months later, AJ signed up for her second donor cycle.

AJ: Yeah, for me helping people kind of trumps everything. Going through something and not feeling well is worth it if it means making a family’s dreams come true. Having a family, that’s kind of a big deal.

The fertility clinic said they could decrease AJ’s future hormone doses to decrease her chances of hyperstimulating again. She agreed. And after that, it was fine. Her second donation produced 13 eggs. Her third produced 23; her fourth, 25; and her fifth, most recently, 26 eggs.

AJ: The scariest thing about being a donor for, not just for me, is that they don’t know the long-term effects of a lot of these drugs that are going into our system. Like maybe in 10 years a bunch of donors are going to get cancer, but who’s going to know about that unless they make a big fuss about it in the news and you know. 

It’s a little mind-boggling, but in the 25-year history of egg donation, there hasn’t been a single large, long-term group study of former donors. One of the reasons is because right now, the government doesn’t regulate egg donation. Instead, it operates on a set of recommendations created by the American Society of Reproductive Medicine, a member-based medical non-profit. Standard guidelines, like limiting egg donors to six lifetime cycles, are based on studies of infertile women who use similar fertility treatments like IVF. There’s a problem with doing things this way. As it turns out, egg donors tend to be a lot different from their infertile counterparts. They’re younger, thinner, poorer. And no one knows what will happen to them down the road.

JENNIFER LAHL: It’s exploitive. Rich wealthy women aren’t selling their eggs. Even if the risks are fully disclosed, you’ll still say, “Yeah yeah yeah – where do I sign?” You’ll take more risk if you have more need.

Jennifer Lahl is a former nurse and one of the most outspoken critics of egg donation. She recently made a short film about her concerns called, “Eggsploitation.”

“Eggsploitation” is a scary film. It features five women, all former donors, who have had serious health problems since they gave away their eggs. Breast cancer, colon cancer, unexplained infertility. Ovarian hyperstimulation, like what happened to AJ, where your ovaries fill up with fluid. In the worst cases, they can burst like water balloons.

But the big question is, did their health issues come from their egg donation? Lahl thinks it’s a distinct possibility.

LAHL: We know there’s risks because women take drugs, and have surgery and use anesthesia. We’re not fooling ourselves to think we can do this risk-free. And do we want women in their prime fertility years assume risk? And for what? So someone can have a baby. No one is going to die if they can’t have a baby.

A lot of what Lahl was saying made sense to me, but I had also talked to several donors who had gone through their cycles without any problems. And what about couples like Matt and Chris who couldn’t have biological children? As an egg donor, I could give them that chance to experience the joy of parenthood. How did that measure up to the possible risks? I found myself utterly confused, as you can hear in this audio diary I recorded after my conversation with Lahl.

TERESA (in audio diary): Teresa here. I have a cold, if it’s not completely obvious by now. I feel like I got a lot of insight in this trip. I talked Matt; he called me. I haven’t talked to him in a while about this story, and I was a little nervous talking to him because the stuff I’ve been researching has been pretty negative on egg donors, especially that “Eggsploitation” documentary which it made me really think like, I spent so much of my life being healthy. And here I am considering doing something that could very well increase my chances of breast cancer; it could very well decrease my ability to have children in the future. I was kind of this close to saying I made up my mind. But how do you bring this up to someone you really care about… I feel like a terrible friend to do this kind of thing to him. And we are family. And we’re going to have a relationship together no matter what. As much as I know he wants a kid someday, he’s not willing to risk our relationship. Ironically, isn’t that exactly the kind of person you think should have kids?

Two weeks later, I meet up with AJ Rogers again, this time in San Francisco for her egg retrieval. The night before the surgery, we sit on the bed in her hotel room in Fisherman’s Wharf, where she and Steven are staying. Her belly is a lot bigger than the last time I saw her, and she seems a little uncomfortable.

AJ: Yeah, physically I’m not feeling great. I’m feeling worn down. I have a pillow here because my pants are undone because they’re too tight with my belly being so big right now. And it just seemed inappropriate getting interviewed with my pants undone. So I have the pillow there to make it seem like I’m still appropriate.

By her doctor’s most recent estimates, AJ’S normally almond-sized ovaries have stretched to accommodate almost 20 mature egg follicles, several of which are up to an inch across.

AJ: I feel like all my internal organs lift and crunch against me, like against my lungs. Hard to describe. Like it’s not like the first time when I donated my eggs and I was having a hard time breathing. It just definitely feels like there’s a lot more jam-packed into my abdomen than normal.

Usually, the body only makes one of these mature eggs each month, but the hormones that AJ has been taking have made her ovaries temporarily go into overdrive. AJ’s doctors say she’s doing a great job, though she’s says she’s not entirely sure what that means.

AJ: I still wish I knew more about what was actually going on inside my body. But it seems like there are so many different things to understand, and I should probably be concentrating on keeping myself healthy instead of reading too much about what’s going on inside my body. I might freak myself out that way.

One way AJ comforts herself is by reading the letters she gets from women who’ve had babies thanks to her – and the women who are hoping to have them.

“Dear Angela. I’ve been thinking of you often recently as we get closer to the egg retrieval, and hoping you’re getting through the final phase without too much discomfort.”

“Hi Angela, we just want you to know that for us, family has and always will be everything that is important in the world.”

“Hello Angela, I’m very glad to meet you and your genes. When I was your age I never imagined I would have a child in this manner, but here we are, and thank you for being interested in helping me realize a life long dream.”

AJ: Just reading these letters makes me think about my own fertility.

TERESA: When do you think you want to have kids?

AJ: I’m pretty ready now.

A little after 7am the day of the surgery, I pick up AJ and her husband from their hotel and drive them to the fertility clinic. We’re the first patients to arrive. The nurses take AJ into the back room for surgery prep.

Here’s how the operation works: Doctors will put AJ under anesthesia, then use a long, thin needle to take the mature follicles, which will later be fertilized and transferred to her recipient. The entire process only takes about 20 minutes.

I sit in the waiting room with AJ’s husband.

TERESA: So you're not nervous or anything?

STEVEN: I get a little nervous. But, I don't know. I think I was more nervous the first and second time for sure.

TERESA: She seems really enthusiastic about it.

STEVEN: Yeah it's kind of not even a big deal to her anymore. Like as far as the process she has to go through, she kind of has it down. And they all acknowledge that. Like, “Oh yeah you know how to do this. This is easy for you.” (laughs) “You got it.” Maybe I forget… it's still a surgery though.

After a short wait, the nurses came back give us an update on AJ’s surgery. The doctors had been able to retrieve 27 eggs – 10 more than they had expected. AJ’s recipient didn’t come to the surgery, since she was prepping for her own procedures. But she sent AJ a thank-you basket containing boxes of coconut water, a hand-made journal, and a brand new iPad. 

The next day, I asked AJ if she wanted to celebrate. After all, she was about to start a new chapter in her life. No more scheduling her evenings around injections, or skipping her morning coffee. No more blood draws or ultrasounds or IVs. She was free to do whatever she wanted. And as it happened, she had precisely the thing in mind: an evening of karaoke

Angela seemed happy, her husband Steven was relieved, and it seemed like all was well.

A few weeks after the surgery, I got a call from AJ

AJ: So when I got back to Portland my belly started expanding. Like getting bigger and bigger, and I started feeling worse and worse. When it got to the point that I couldn’t put on my own shoes I thought, “Yeah this is a problem.”

AJ called the fertility clinic doctors in San Francisco, who told her that she was showing signs of hyperstimulating. They said she should go to the hospital right away.

AJ: I went to the ER. They didn’t know what to do with me. I told them I had had that a couple of years ago, and what I needed to be monitored and get some sort of ultrasound to make sure that there wasn’t any severe complications like that my ovaries weren’t twisting. Because ovarian torsion is like your ovaries are a water balloon and your ovaries are being twisted, and you know, you twist a water balloon it’s going to pop. 

And the seriousness of it hit me. Like, I am also closer now to wanting to have kids than I was when I started my egg donation. What if this ruins my ability to have children? What if I do lose my ovary because of this? What if this is giving me permanent damage? We don’t know. No one knows.

The next day AJ left the ER and went to a fertility specialist who knew more about egg donation.

AJ: They gave me an ultrasound and I got to see my ovaries on the screen, and they were gigantic. Each of them were almost the size of grapefruits. And there was fluid all around my entire abdomen that had leaked out of my ovaries and was surrounded all of my organs.

The doctor told her she needed surgery right away.

AJ: It was horrible. They took this giant needle, and inserted it in vaginally. It had to go through my cervix. No anesthesia or anything. I was awake for the entire thing. And it was this needle that sucked out the liquid and just took out a liter and half of fluid.

The surgery worked – AJ would not lose her ovaries. And afterwards, she felt physically better. But she was still weak. And she still had a lot of unanswered questions.

AJ: I’m hoping in a few weeks to go get my ovaries checked and that they’ll be cyst-free and normal sized, and that everything will be fine. That’s what I’m hoping. But I’m a little nervous. No one really knows if that will affect me long-term until it does or it doesn’t.

AJ’s getting sick hit me pretty hard. She had seemed so positive about the entire egg donation experience, so confident that it would turn out alright for everyone, and I had been there imaging myself in her place every step of the way. And now, looking at pictures of her distended abdomen over Facebook, it just didn’t seem worth it. Not for a couple of thousand dollars. Not for the good feelings. Not if something like this could happen to me.

AJ: And you know, maybe that’s a good thing. And I don’t think I would have said that in the past but I don’t want my friends to have to go through this same thing.

A few weeks later, I heard from AJ again. She was feeling better, and had just found out that her recipient was pregnant. The goose with the golden eggs had done it again. And she sounded really happy. So happy that it was almost as if she had forgotten our last conversation. I couldn’t forget it though. And so I called Matt and told him AJ’s entire story. I told him I wasn’t sure the risk was worth it.

MATT: You’re right. You’re absolutely right. The question is, well first of all if you go through with it we’re not going to let any of the sort go down.

TERESA: I know, but this industry is not set up to handle anything when something goes wrong. That’s the reality. That’s kind of the take-home point. When things go right, it’s great for everyone. A lot of people are positive, refer family members. But when shit goes down, everyone is woefully unprepared.

MATT: It’s like you said, this investigation is more an audition of the industry.

TERESA: It is ‘cause this is not me saying, “Would you guys be great parents.” You guys would be fantastic parents. You guys would be amazing. And one way or another you will be.

MATT: Well, if it turns out this is not something we pursue, then so be it. Because I’d much rather this be a harder decision than going into this not knowing the consequences and having a bad outcome.

TERESA: We’re talking about your life, though, we’re talking about your ability to have biological children…

MATT: Well life doesn’t always happen exactly how you would have it done or planned. There are wrenches thrown into the mix and we deal with them. I had grand plans of marrying a woman (laughs), and that turned out just fine.

For Matt and me, there isn’t a happy ending. Until we can find some answers, or a clinic willing to work with us to minimize the health risks, I can’t be his egg donor. I hope we can work it out. Because I do think Matt would be a great father. I wish it were as simple as just laying a golden egg.

In San Francisco, I’m Teresa Chin.

[Audio for this story will be available after 5pm PST]

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