Elle Meagan Bell's story

What happens when an egg donor is
impaired for life following her egg "donation."

 

Elle Meagan Bell 1

 

When my two kids were very young, I came across this parenting website that had a lot of forums. One forum talked about sperm and egg donors and recipients. I’d never heard anything about this, and so out of curiosity I explored this forum group to learn more. I found myself feeling a lot of sadness for people wanting to have children who couldn’t. My own kids were great, and I felt that others should also get to have the extraordinary experience of raising a child. At the time, I learned that $2,000 was being offered to women who might be willing to donate some of their eggs to help make a family possible for others. As little as that sounds, that was a whole lot of money for me. I was in the process of getting divorced. I had two small children, and was not going to be receiving any child support. That amount of money would make a very big difference for m and my kids.

I did not want to go with an egg donation agency or a clinic because, at that time, all of them only wanted egg donors who agreed to remain anonymous and did not ever want to be known to, or be reachable by, any children who might be conceived using their eggs. For me, however, it was important that I be a known donor and reachable by any children who were conceived using my eggs, so that I could share with them things like health information and anything else they might want to know about their ancestry. I confess that I was also hoping that any children who were conceived with my eggs might also want to be in touch with me one day, as I would always want to know how they were doing.  Were they happy?  Were they healthy?  Were they loved? That was important to me. If I was a donor-conceived person, and I found out that I had a second mother, I know that I would want to meet her, or at least have the opportunity to meet her. I don’t think anonymity is good when access to information about somebody’s genetics and identity is at stake.

But by insisting that I not remain anonymous, I proved much less attractive as an egg donor.  No egg donation agency or clinic would take on a known donor at that time.  They claimed it was for my protection, as an egg donor, to remain anonymous. What I’ve learned since then, however, is that anonymity allows these clinics and agencies to sometimes act unethically while hiding behind a  veil of secrecy. For instance, some people select a donor, and then find out years later that the eggs of another donor were in fact used. Where there’s total anonymity, nobody’s making a representation about who is the biological parent. Anonymity is about profit.

Before California legalized commercial surrogacy, one could still act as a surrogate, but in order to transfer parentage to the buyers of the child, the buyers had to go to court and undergo an adoption procedure, and the surrogate had to formally relinquish all parental claims. This procedure created something of a public record that allowed surrogate children who wanted to to be able to track down more information about their heritage. It also meant that the buyers of surrogate children had to undergo at least a little screening to demonstrate that they were fit and able to be parents.  But after California legalized commercial surrogacy, the child buyers’ names could go right on the child’s birth certificate without them ever having to go to court or make any kind of appearance, or undergo any kind of screening. So this new surrogacy law enables anonymity to be even more effectively achieved.  And, of course, the new law continues to allow both egg donor contracts and surrogacy contracts to remain totally confidential.

When everything about surrogacy is kept private and confidential, you as an egg donor can think that you are donating your eggs to a couple who are wonderful people and desperate to have a family.  Only later on might you learn that these people wanting to be parents, although they had plenty of cash, could never have passed any screening and would have been rejected as adoptive parents. They could even be be convicted pedophiles. Where everything is secret, you have no way of knowing if the people you are helping will be good people, or if they are very bad people who have enough money to do what they want.

I also wanted to know that the parents who would be using my eggs to create their children were good people, that we had similar values.  For all of these reasons, instead of going to an agency or a clinic, I went to a website that catered to both donors and recipients, and featured information—photos, letters, bios-- about those seeking egg donors, which allowed me to choose who I wanted to sell my eggs to.  I got to choose who I wanted to help, which is very unusual in the donor world.  The donor doing the selecting was very rare. I chose a couple who claimed to have similar values to me, and who promised to be honest with their children from birth, about me and my identity. But I also chose them because they lived only about an hour and a half from me, which was important because should they ever need me, I could make myself available right away.

Elle Meagan Bell 2

I also insisted on some other restrictions in our contract that I would not have been able to do had I used an agency or clinic.  I wanted to limit the amount of embryos they could use at one time, because I knew that carrying multiple fetuses was very dangerous for both the carrying mother and the children.  I specified that the buyers of my eggs could transfer no more than three eggs of mine at a time.  

Despite our having spent six months going back and forth with attorneys drafting the contract, the buyers disregarded pretty much everything I’d insisted upon. Five days after I donated my eggs to them, I learned that the couple transferred four of my eggs in one go to the surrogate they’d hired.  So my contract was breached within five days of our signing it.

Later, I also learned that the couple never told their kids about me. I kept thinking that at some point the kids would reach out to me, so, when they were ten or so and I hadn’t heard anything, I contacted the parents and asked, “Have you told them?”, and was told, “No, we haven’t.”  It turns out that the kids were led to believe that their mother was their biological mother, and that they knew nothing about having been conceived with my eggs.  I felt deeply betrayed, and angry, upset, let down.  I had met with these parents many times, together with the lawyer we shared, before signing the contract. But because the lawyer was paid for by them, it turns out that they were the only people he was looking out for.  He had no interest in helping me when they’d breached the contract.

They claimed that they would tell the kids between middle school and high school.  But then that didn’t happen. But they kept saying, “we’re going to tell them, we’re going to tell them, only, you know, I don’t know how,” and, you know, seven years went by and they still could not find the right time to tell the children.  

Eventually I told the parents that I would no longer provide them with any health updates.  (And since my health has been horrible since I donated those eggs, they wanted those updates.)  But I told them that, when the kids became adults, that I would only update my health with them, because it directly affects them.  

Just before their 17th birthday, and after I had threatened to withhold all health information that might concern the kids, their parents finally told their kids the truth. And the after that, I finally met these kids two years ago. It was amazing to see that my donor children look far more like me than my own raised children do! But by this time, even though we are biological relatives, the meeting felt so uncomfortable.  It was wonderful, it was exciting, but it was also uncomfortable, it was weird. 

I got into a really large argument with their mother after the meeting.  I had asked her in advance of our meeting if she could help me find some topics to discuss so that I could speak with the children about something that they were interested in, but she had the audacity to tell me these things need to come organically.  I said, “Well, if anything was going to come organically, you would have been honest with them from birth.  There's no organic-anything here.  This is all a shock to them.” By the parents lying and forcing me into anonymity, my worst nightmare had come true.

It had been really trying telling the parents about all of my health problems--health problem after health problem after health problem—and sharing the most painful and discouraging news of my life.  Yet, when I asked the parents if the kids had any  health problems, they lied. I was especially very concerned with whether my biological daughter was getting migraines like me.  Several years ago, I started going periodically blind, with no warning. It is scary to lose your vision.  Later on I told the kids’ mother about that and she said, “Oh, my daughter gets that too.” It must be so scary for the daughter we share to have to deal with these health problems that don’t exist elsewhere in her immediate family. I don’t think parents should lie to their children about who their children are. That to me is a form of child abuse.  Secrets are not healthy.  And thankfully with the advent of DNA, these secrets are being found out, as they should be.

I was 22 when I signed on to be an egg donor. I was a kid. At the time, I had a four year old and a two year old. In addition to parents picking the attorney we were to use for our contract, they chose the reproductive endocrinologist that we both used. (Back then, egg donation was handled a little bit differently than now, because at that time you could not freeze eggs by themselves.  It just didn’t work. They had to be embryos.  And, when you went through it, fresh embryos were way more successful than ones that had been frozen.  So by wanting and using fresh embryos, it was necessary to sync my menstrual cycle with the surrogate’s menstrual cycle.  But because she had endometriosis,  there were a number of complications that arose while trying to sync our cycles, which ended up requiring me to stay on hormonal drugs a lot longer than I probably should have.

For a full month, I had to take daily injections of a drug called Lupron. Only later did I learn that Lupron was only FDA-approved for use in chemotherapy. Nobody ever told me that.  Nor did anyone ever tell me that Lupron had never been tested on women.  The drug was only approved to treat men with terminal prostate cancer or to remove the sex drive from pedophiles.

I had asked the reproductive endocrinologist about health risks.  But what I was told was, quote: “There are no known health problems from egg donation.”  I assumed that meant that the procedures used on me were safe.  What I later learned was, the risks are not known because no one is looking for or studying risks. These doctors line their pockets with money, and don’t want to know what if any health risks exist. It costs $2,000 to have a month to use Lupron for chemo, but the FDA’s watch list black boxes the use of the drug for pregnancy. Black box means that this drug should not be taken by women who are planning on becoming pregnant or who are pregnant.  And yet it is the drug that is still used in most IVF cycles. The reproductive endocrinologist can say there are no “known” risks, because neither he nor anybody else is doing any research.

Egg donation has been around since 1983, and we still have no long-term studies.  Why is that? I think that it is because they will find that there are a significant number of egg donors who had too much hormone stimulation and now we are sick and we are dying. Egg donors often get many more times the amount of drugs that they should because the goal with them is to produce as many eggs as they can get.  For instance, nowadays, a six-pack of eggs is something like $10,000. They’re looking for--like somewhere between 7 to 15 eggs is a good amount. I was actually within that range even though I still got sick.  

When I went through the procedure to have my eggs extracted, I was supposed to be under general anesthesia and unconscious.  But the anesthesia didn’t work.  I was awake during the entire retrieval.  Seeing the reproductive endocrinologist pull out a needle that was, like, nine inches or something?  And then threading that through my vagina into my ovaries? All of that was pretty horrifying.  As was hearing their doctor count the eggs. The doctor would remove one egg at a time, and then pass it on to a technician, who would then look at the egg under a microscope.  I heard the count going up.  “We’ve got two.”  “We’ve got five.”  “We’ve got ten.”  “We’ve got 17.”  But in the paperwork I received later, it said that only 14 eggs had been collected from me. Supposedly the doctor had retrieved 14 eggs, and then fertilized ten of these, and then the parents had four of those transferred to the surrogate who then carried and delivered the twins.  So then there were six embryos left over, but there were also three eggs that went missing. To this day I worry that these three of my eggs ended up being trafficked. And given the history with the parents and their endless lies to me, I also question what happened to the ten embryos they had left over. One of the things I had put into our contract--because I wanted to screen any/all people who would ever want to use my eggs to make children--was that no embryos using my eggs could be passed on to anyone else without my express written consent, unless donated to science. The parents “claim” that they donated the leftover embryos to science.  But given their history, I’ll never know.  And it really bothers me.

I got paid right before I went under the, I’d say under the knife, but under the needle. Yeah, I got a big old bag of cash.  After my eggs were harvested, I kept in touch with the parents. It was very exciting when they got that positive pregnancy test.  We had all put in a lot of effort to make that happen.  We did not keep in touch as much during the pregnancy, but another requirement I put into our contract was that the parents had to furnish me with the full name and birthdays of any children they had that were conceived using my eggs.  And, it was absolutely thrilling when they contacted me and let me know that twins were born and they were healthy.  I felt exhilaration, I felt thrilled that the greatest gift I had ever given to another person had been successful.

But then major health problems kicked in for me. My migraines got significantly worse after my egg donation.  I had gone from having maybe two or three migraines a year to having 27 or 28 migraines a month.  They were incapacitating. Doctors have been trying different medications on me for 25 years for my migraines, and they finally they told me that the only thing they could do is to do surgery around my brainstem or to install an electrical stimulator in my head, but I turned both of those down. So, I have dealt with incapacitating and disabling migraines.

I have also dealt with other health issues that are all on the watch list for people suffering from having taken Lupron. For example, debilitating joint and muscle pain that never goes away. And stomach issues that are permanent.  I’ve been diagnosed with gastroparesis, which basically means the muscles in my stomach don’t work like they should, so I’m not able to compact my food well.  So what you might digest in an hour can take me up to six hours to digest. If I eat late at night, I may wake up in the morning or in the middle of the night having to vomit, because my food sits so long in my stomach and ferments it into something toxic.

I have problems with my bladder.  My teeth have fallen out of my mouth. 

I don’t know if my body could have even gotten pregnant, but with all the health problems following my egg donation given all of the drugs that I was on, I could not responsibly have a child with my husband. And I have a lot of grief about that.  I wanted a child with my husband.

I just about had a nervous breakdown, and ended up on antidepressants, anxiety meds and therapy. It took an awful lot of time for me to work through my feelings and my regret and to find acceptance for having given away my eggs and played a role in conceiving children whose parents lacked any honesty or integrity.  

Everybody seems to focus on the happy egg recipients and their much-wanted babies.  They do not focus on the psychological and physical harms to egg donors.  They don’t focus on the fact that so many of these products, these people created through this technology are saying ‘no, this shouldn’t be happening.’  It’s all about what the rich egg buyers want.  We’re collateral damage.

And my health issues aren’t even as severe as some other donors.  I run a group called Former Egg Donor Support on Facebook.  We’ve got about 100 women in the group, and our group continues to grow.  As a group, we only deal with the aftermath of egg donation. We are focused on the physical and emotional aftermath of egg donation—issues with the egg recipients, and our donor children, dealing with the anger that so many donor-conceived people have, both towards their parents and their biological parents, and us as their parents’ egg donors. For the most part, we tend to get donors joining the group who are many years out from their donation, when the emotional high of doing something good for somebody else has worn off and you’re looking at the consequences instead.

As a result of this Facebook platform, I’ve learned of egg donors coming down with rare brain cancers and breast cancer, even at very young ages. Another thing I’ve seen again and again are egg donors who have been diagnosed with endometriosis after their egg donation.  They didn’t have it before, and were thoroughly screened for the condition before they underwent the egg donation process. But then for some of these women, the endometriosis arrives and is so bad that they’ve had to have their uteruses removed. 

Speaking to other egg donors, it appears that we have a lot of health issues in common. Large numbers of us have issues with our bone density, and our teeth crumbling. Chemotherapy affects bones and teeth.  It would have been nice for us to have known before we agreed to donate our eggs that we would be more likely to lose our hair, and might lose our teeth, and might be hunchbacks by the time we’re fifty years old.  

I also know multiple egg donors who have had ovarian torsion, which made them infertile and unable to have children. Normally women’s ovaries are about the size of a walnut.  But with the fertility drugs used in egg donations, some women’s ovaries become the size of grapefruits.  What happens with ovarian torsion, is that your ovary twists over and presses on its stalk—the fallopian tube--and then doesn’t get adequate blood flow, which can cause the ovary to die. Sometimes the donor can also become septic, and die. 

Sometimes I picture the ovary with all the eggs in it as like a wasp’s nest, where you got all these different cells and each one of the cells has fluid and possibly eggs in them.  So when the doctor goes in to retrieve the eggs with that gigantic needle, he’s not just sticking your ovary once, he’s going to be sticking you over and over and over and over, and so there are also major issues with bleeding for some egg donors. 

There are also a number of donors who have been in a critical medical situation with ovarian hyperstimulation syndrome (OHSS), where the body ends up with all of this fluid in the abdominal and lung cavities, destroying their ability to breath. 

Elle Meagan Bell 3

I would like to see a moratorium on egg donation until long-term studies can be completed showing that it’s safe. I think simply the fact that so many egg donors have gotten sick, and died, that we deserve to know that, and to know whether we will still be able to have our own children, and that we are not going to be disabled. 

I think a lot of people don’t put it all together: You have a woman that gets crippled from egg donation, and she can’t work.  Who’s going to be taking care of that?  Not the clinic; not the agency; not the egg recipients.  She is on her own.  There is no help. So maybe she ends up on Medicare, maybe she ends up on welfare.  So the bottom line is, everybody ends up paying for these women who’ve donated their eggs.

Egg donors often get many more times the amount of drugs that they should because the goal with them is to have as many eggs as they can get. I know of egg donors that have donated up to 80 eggs in one cycle.  But first of all, who wants 80 children? Secondly, where are the rest of these eggs going? Regardless of how many eggs are retrieved, the donor gets the same amount of money.  So why are these doctors taking such incredible risks with our bodies? Answer?: Because the eggs of a young healthy women are really valuable.  And it seems to me that the doctors are okay with harming egg donors with practices that are not safe, especially because they know we tend to be poor and don’t have the money to sue. 

Once an egg donor’s eggs are retrieved, most in the fertility business like to pretend she doesn’t exist and just wish she would go away. They dehumanize her, or say ‘she knew what she was getting into.’  Well, without knowledge of the risks, no egg donor knows what she’s getting into.  Another thing that is really lacking is psychological help and counseling. I was never told that I might eventually feel a tremendous amount of psychological harm after I gave my children away or that I feel a lot of pain because my children were lied to or that I might regret what I did, which I did.  I don’t regret the children, and I would go through all these health problems so all my children could exist, but I would never do it again. I don’t think anybody should do it.  The risks are too high.

Physically, it is not responsible. I have heard egg donors having a health policy on them that lasts 30 days after their egg donation.  Whereas, from what I can see, it can take several years for the health problems to develop.  And then they’re on their own.  For me, I received $2,000 for my eggs, but I’ve probably lost a million dollars in lost income, because of not being able to work.  I was a fire inspector, and I was very close to becoming an arson investigator. But in the last thriteen years, I think I’ve been able to work about two years.  It has been a huge financial sacrifice. Every year I have spent more on health care than I received in compensation.  Twenty  years of medical bills for lots and lots of doctors and testing. All of that adds up, and I figure between lost income and expenses related to my donation, I’ve probably lost a million and a half dollars, lost or spent it.  I lost my home because of medical bills.

I only donated my eggs once. But I’ve since learned that the more donations a women does, the more likely she is to have health problems.  Given how sick I’ve been following one donation, what about those women who’ve donated multiple times?  

Elle Meagan Bell 4

I wish egg donors would see that we’re not the angels everybody claims us to be.  We are quite literally selling our children.  And that can leave a very distasteful feeling when, when you really sit back and hear from donor-conceived people who are calling us baby sellers.  It doesn’t feel good.  As many donor-conceived people say, they feel half adopted. We need to be concerned about egg donors’ health, but we also need to understand and support the ‘products’ created from our ‘donations,’ who are quite literally our children.  It seems the women in my Facebook group--the older they get, and if they’ve had life changes, if they’ve had children of their own-- it brings them back to wondering about their children through donation.  And the anonymity of it, and for some of them being told that they will never be able to find out anything about their children is very psychologically hurtful.  

All we see in the media, generally, are happy stories of recipients who are happy they received their long awaited child from egg donors who feel really good about themselves initially with their altruism to help another family.  What we don’t see are the stories about the egg donors who are sick and dying.  We don’t see the stories about the struggles that our children face. Many of them feel that third-party conceptions shouldn’t exist. I think the biggest voice we should listen to in this entire story is the voice of donor-conceived people.

 

Sources for this story

 

Recorded and transcribed interview conducted with Elle

 

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