Saturday, November 14, 2020

Your Children Are Not Your Children

One afternoon, shortly after my diagnosis of Familial Hypercholesterolemia (or FH, high cholesterol due to genetics, not lifestyle), I found myself finished with work, a sleeping baby in my arms, and an open laptop. I clicked over to the Facebook group for West Coast IVF…where a woman was debating whether or not to reject a donor embryo profile. I can’t remember the exact bugaboo, but it was not genetic. When someone questioned why she cared about a non-genetic trait, she said the egg donor didn’t seem like someone she would want to “get to know.”

“Get to know?” I wondered. “Why would you want to get to know your donor? The whole point of anonymous donors is to not know them.”

I thought she was being “extra.” Turns out, I was na├»ve. But I didn’t realize that yet.

I soon found another discussion about locating genetic siblings of donor-conceived babies. Someone mentioned that many sperm banks have private Facebook groups where you can search for a sperm donor’s name to see if there are other offspring from the same donor.

I love me a good rabbit hole. Down I went. Within a matter of clicks, I was accepted to a private sperm bank group on Facebook. I searched for my sperm donor’s name and within seconds, a little girl’s face came up on my screen. The resemblance to my baby was uncanny. They had the same shade of brown hair, the same nose shape, a similar mouth. Beneath the photo, there were comments and photos from other women who also conceived with the same sperm donor.

My baby had a slew of half-siblings. And they had a private Facebook group of their own for sharing personal info and photos. Did I want to make our family known to them? Did I have to?

I had always imagined that I would reach out to my baby’s genetic relatives at her request, much later in life. But now I had seen the half-siblings. I knew they existed. Would my baby ever forgive me if, when she grew up, she knew I was looking right at them and I didn’t get as much information as I could about them?

I couldn’t answer all these questions on my own. So I crowd-sourced the answer, on yet another Facebook group – the largest one (to my knowledge) for donor-conceived (DC) adults, recipient parents (RPs), and gamete donors.

My post went something like this: “I am the mother of a 3-month-old baby conceived with a double-donor embryo. I’ve just located some of her half-siblings on Facebook, but I am unsure if I should reach out now or wait until my daughter wants to initiate contact. For the RPs out there, when did you decide to initiate contact?”

That would be the first and last time I ever posted something on this particular Facebook group. My post was slammed with comments, primarily from angry DC adults, saying how dare I deny my child the opportunity to know “her family.” (“She already knows her family!” I wanted to scream at the screen. “She lives with us!”)

Many RPs said they’d connected with their children’s genetic siblings and half-siblings when their children were little; the ones that didn’t regretted not doing so sooner. They exchanged photos, growth updates, and medical information with the other families. Some even went on vacations together!

I didn’t see myself going that far. I didn’t want to make friends, per se, I just wanted to know the identities of the half-siblings in case my daughter wanted to find and connect with her genetic relatives someday.

But apparently, that was not an option. It was all or nothing.

As I scrolled through the endless comments on my post, I encountered the great divide between DC adults and RPs – at least in this particular group. To grossly generalize, DC adults thought that anonymous donor conception was unethical and felt bitter that they’d been lied to and/or denied relationships with their genetic relatives. They found RPs’ so-called dilemmas incredibly annoying and self-centered. (“It’s not about you!” one DC adult commented on my post. “OK, it’s not all about me, but it is a little about me! I am her mom!” I wanted to reply.)

RPs were fond of saying “Genes don’t make a family; love does!” They thought that all the infertility hell they went through to bring their DC children into the world was proof of how much they wanted them, that the amount of love they showered upon their children would somehow compensate for not knowing their genetic relatives.

The language in the group was so loaded. DC adults abhorred terms like “diblings” (donor siblings) while RPs took offense at being called “social parents.” Everyone argued. There was no dialogue, no space for listening or understanding – just the internet equivalent of shouting over one another. 

DC adults seemed unable to empathize with how gut-wrenching infertility is – and how limited family-building options are depending on the infertility diagnosis. The DC adults grieved the loss of their genetic connections and said that their conception stories traumatized them, but didn’t see that RPs experienced grief and trauma, too. (Studies have found that infertility challenges can be as stressful as dealing with a cancer diagnosis.) I don’t think any RPs choose donor conception believing that they might harm their DC children. I certainly didn’t.

Call me a coward, but I could only take so much meanness. I deleted my post to stop the comments. But I kept coming back to the group – to read the DC adults’ rants, to see the photos of genetic relatives gleefully reunited, to sift through other RPs’ well-intentioned questions about how to navigate all this.

What was clear to me was that no one can understand the choices infertility compels you to make unless you've experienced infertility yourself. And no one can understand the emotional toll of being donor-conceived might take, unless you are donor-conceived yourself. 

I underestimated how important genes were when I chose donor conception. Genes do matter – to some people, some of the time. They didn’t matter to me. I loved my DC baby just as much as my bio daughters (I don’t even like differentiating them as such). I wanted to be my baby’s only mother, or at least be considered her “real” mother, but now I understood that she might have a different interpretation. I didn’t want her to be angry like some of the DC adults raging on the Facebook group, but I also acknowledged that I had no control over her feelings. 

“I hope we didn’t do something ‘wrong’ with the way we brought the baby into this world,” I wrote in my journal. “All I can see is the joy and happiness and giggles and love that she brings. I can’t imagine her ever hating me. I think we are as bonded as a baby and mama can be.”

What frustrated me is that the DC adults seemed to assume that knowing and being raised by your genetic family was a panacea. That simply isn't true. I am not close to my parents or my brother, though we all share DNA.

Genetically related or not, no child gets to choose their conception story or their family structure. We all have to come to terms with the families we are raised in. I didn’t want divorced parents or a step-dad or step-siblings, but that’s what I got. My teens struggled to accept my and their dad’s divorce as well as our respective remarriages and new siblings, but they’ve come through it OK.

And yet. This was not a divorce or even a blended family situation. It was something new; uncharted territory for me as a mom. To process all this, my husband and I did another session with the infertility therapist, Dr. Midler, who we saw while in the process of signing up with West Coast IVF. She was not surprised that we were only just now considering the ramifications of donor conception.

“Everyone has blinders on when they’re trying to get pregnant,” she said. “Having a baby is primal, not logical.”

She suggested connecting with the half-sibling group, taking an “open, with filters” approach to communication.

Armed with that advice, I went back to the sperm bank group and commented on my baby’s half-sister’s picture saying that I used the same donor. That comment yielded a friend request, then screening questions from the half-sibling group admin. By the time she granted me access to the group, I felt exposed, unsure if I wanted everyone there to know me and my baby. But introduce us I did, and then everyone in the group responded with warm greetings and photos of their children.

It was weird. It was wonderful. It was overwhelming. It was hard to fathom that one man had helped create all these look-alike children – over a dozen of them. The sheer number kind of creeped me out. How many babies was one sperm donor legally allowed to genetically contribute to anyway? Are there even laws about such things? Because it seemed like this sperm donor needed to be stopped.

“Did you go through West Coast IVF?” the group admin asked me in a private message.

I confirmed I had.

She told me that another member was expecting my baby’s full genetic sibling – a girl. When I looked again at my messages, I saw one waiting in the “other” folder. The expecting mom had emailed me weeks ago, saying she suspected we had the same embryo profile based on some comments I made on the West Coast IVF Facebook group. We compared notes and indeed we did share the same embryo profile. She was due in the fall. Ours were, as far as either of us knew, the only pregnancies from our profiles. The babies would be full genetic sisters, only five months apart; practically twins.

I don’t know how one is supposed to feel in this situation, but my first reaction was sadness. I felt like her embryo “belonged” to me, that her baby should have been mine. I was mad at myself for not foreseeing how important a genetic sibling might be to my baby, for not transferring two embryos, for not asking West Coast IVF if I could “reserve” her genetic siblings somehow. Now I had to confront the reality that my baby only had one full genetic sibling in the whole wide world – and she was going to be born into, and grow up with, another family halfway across the country.

I don’t believe donor conception is unethical. I believe it is a godsend to many people struggling with infertility. But there are parts of it that are problematic. Anonymity is one (though as Dr. Midler liked to say, there is no anonymity these days thanks to genetic testing and social media). Another is the practice of separating genetically-related embryos. Adoption agencies don’t separate siblings anymore because of the trauma that such separation causes; why should fertility clinics get to rip siblings apart just because they are in the embryo stage?

Though my baby had more genetic siblings than most people could even fathom, I began to worry about her feeling alone – not just because she was the only donor-conceived member of our household but because my older daughters would be leaving the nest soon. While I had romanticized the idea of a cozy, three-person family, I now wondered if it was good for the baby to essentially be an only child under our roof. Wouldn’t she be lonely?

I knew trying for another baby the old-fashioned way was not only futile, but cruel, given my FH diagnosis. If we wanted to give our baby a sibling, we would have to be intentional about it. Meaning: we would have to get back on the infertility treatment treadmill

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