When I donated my eggs 10 years ago, I wish I'd known these things

Somewhere in this world are two children who share my genes.

ByABC News
July 6, 2017, 3:13 PM

— -- (Editor's note: This article originally appeared on Babble.com. It has been reprinted here with permission. The Walt Disney Company is the parent company of both ABC News and Babble.com)

Somewhere in this world are two children who share my genes. I know next to nothing about them, beyond the fact that they’re twins coming up on their 9th birthday, born to parents I believe desperately wanted them and who must love them deeply today.

I donated my eggs to those parents 10 years ago now. A few years after that, they asked me to donate again. But by that point it had become clear that my body hadn’t responded well to the meds involved in donating. At just 26 years old, I was looking into fertility treatments myself, having recently been told that I was quickly losing my own ability to conceive.

After learning that I’d be unable to donate again, the parents of those children sent me a beautiful letter. They thanked me for the gift I had given them, shared a few details about their little ones, and even offered to send me photos and potentially maintain some level of open communication in the future.

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I never got those pictures. Or any further updates. The agency I had donated through simply stopped responding to me when I got back to them saying that yes, I would love photos and would be happy to share the results of my own fertility treatments with this family.

I called. I e-mailed. I even said at one point, “If they changed their minds, please just let me know.” But I never heard anything back.

All these years later, I don’t really know what to think. Maybe the parents got nervous, deciding they would rather not know anything further about me, after all (or to have me know anything further about their kids). But I don’t think that was the case. They were so warm and open in their last letter to me and they were the ones who seemed to want more open communication. If they had changed their minds, it would have been so easy for the agency to simply tell me that was the case.

Instead, I was essentially ghosted.

The agency’s sudden shutdown of communication makes me think this was about them. About their business. About what clinics gain by maintaining anonymity between donors and recipients. And about the fact that I was the rare donor who was injured as a result of donating.

Maybe I wasn’t the face they wanted to associate with their business. Because I’m the egg donor agencies don’t want other potential donors, or even hopeful recipients, to know about. I’m the person they say doesn’t exist.

I guess I’ll never really know.

When I first donated, a nurse went over all the possible complications with me. Infertility was listed among them, but she brushed over it and said, “There are no studies telling us that’s a real concern. You’re young and healthy. That won’t happen to you.”

The truth is, I was young and healthy and my donation cycles went beautifully. I was told more than once that I was the perfect donor. Until my body started to go haywire just six months after donating.

I was eventually diagnosed with Stage IV endometriosis. Every doctor who has reviewed my before and after records has said they believe I likely had an underlying case of the disease prior to donating. But because endometriosis is hormone dependent, pumping myself full of egg-making drugs caused it to become incredibly aggressive. Just three years after the egg donation cycle that produced those two healthy babies, I attempted two rounds of IVF myself.

Both failed.

Now, at 34 years old, I have come to accept the fact that I will never be pregnant. I still don’t regret donating my eggs. I know that there are two children in this world who were very wanted and are very loved. How could I ever regret being a part of that?

I also know that I never would have found my way to my own daughter, whom I adopted four years ago now, if it hadn’t been for the loss of my fertility. And I can’t imagine my life without her today. I can’t imagine raising anyone else but her.

So no, I don’t regret donating my eggs. But I do regret how woefully uninformed I was. I regret blindly believing the nurses and doctors who told me this was a totally safe procedure, when what I now know is that there are exactly zero long-term studies into the safety of donation. Yes, there are studies about the meds and procedures involved in donation, but those have all involved infertility patients — study groups of women typically in their late 30s with medical issues that have contributed to their infertility. They are an entirely different population from the egg donors who are usually in their early 20s with no similar medical issues prior to donating. Medically, there is no comparison between these two groups of women who are then often given the same dosages of medication

I wish I hadn’t been so young and naïve when I donated and simply accepted what I was told as fact, without ever digging deeper.

But the thing I regret the most is that I consented to anonymous donations. At the time, I just didn’t think much about it. Anonymity was what the agencies all pushed for. And besides, these wouldn’t be my children. Why would I need to know anything about them?

For the record, I still absolutely know that these are not my children. As a mother through adoption, I understand 100 percent that it’s not genetics that makes a parent.

But I also know that there are ties there and that cutting those ties can have consequences. I see what my daughter gains from the open communication we maintain with her biological family. And I see what I gain, by having someone to reach out to when I have questions about family medical history or even just little things about my daughter that I’ve come to understand are a part of where she comes from.

And yeah, I have a curiosity about those kids I never before realized I would have. They are almost 9 years old and I know nothing about them. I don’t know what they look like, what they like to do with their free time, how their personalities have been shaped. And I wonder about them. Not in a desperate or yearning sort of way, but more in the way one might about distant family they’ve never had the opportunity to know.

I wonder about their mother, too. This woman I share the heartache of infertility with. A woman who wrote me an incredibly warm letter and who seemed to want more contact with me, as well -- a woman I have always felt connected to, even though we’ve never met.

I wish now that I had asked, before I ever donated, if those lines of communication could be open. I wish I had never consented to remaining anonymous.

I don’t regret donating. I don’t even regret the pain and heartache that followed. But I do regret not knowing.

And all these years later, I still wonder.