Why we’re open about using donor eggs

Recently, I posted on Instagram about how I had explained egg donation to my new osteopath. (That particular post was about the correct terminology when discussing third-party reproduction, but that’s a topic for another day.)

My post apparently hit a nerve with one woman, who commented that she discovered as a pre-teen that her parents had used a sperm donor. She was clearly in a lot of pain still, saying that she wished she had never found out, and that she wished others didn’t know that about her, as she didn’t think it was anybody else’s business.

Obviously we want only the best for the baby we fought so hard to have, and I appreciated her point of view, so I wrote a long response acknowledging her pain and explaining our carefully considered reasons for our openness. However, when I went to post it, I discovered that she had deleted her comment. I still don’t know what changed her mind about posting, but I’ve been meaning to write a blog post on this topic anyway. So here I will explain our reasons for being open with our daughter, our friends/family, and the wider community, with the acknowledgement that every situation is different.

Should we tell our child?

When I was first researching egg donation, my googling quickly led me to articles on whether or not to tell any child conceived this way, as that’s obviously the first concern for most people.

What I learned was that if a person discovers at some point that their origin story is not what they thought (like my commenter), this sudden realization can indeed be quite traumatic. The discovery may be on purpose, such as if the parents have chosen some set time to reveal the information, but it could also be on accident, such as from a discrepancy in their medical history, from a relative letting it slip, or from the genetic testing (e.g. Ancestry.com) that’s becoming increasingly popular. In order to best avoid any (intentional or unintentional) traumatic revelation, the experts therefore recommend ‘early telling’, where you tell your child from a very young age (using, for example, the wonderful children’s book Happy Together: An egg donation story). This helps ensure that your child doesn’t have a specific moment in their life when their whole identity suddenly changed.

Should we tell our family/friends?

Once you’ve decided to tell your child from a very young age, you can’t guarantee that the information will stay private. We’re talking about little kids, after all (like my friend’s 5-year old, who recently emerged triumphantly from the bathroom announcing “My dad went POOP!”) But should you actively tell your family and friends?

In our case, our egg donor (Marie) is a close friend from my childhood, and her husband is my grad school roommate. Our families are friends, and many of our close friends are mutual. Partly due to the logistics of getting she and her husband to Europe for the donor screening — and then again (+2 young kids) for the several-week-long egg retrieval process — we were open with our families and friends from the beginning. In a true act of support, Marie’s mother even generously paid for their flights.

Even if logistics weren’t a factor, we were excited to tell our families and friends because of the beautiful gift that Marie was giving us. We didn’t even know if it would work at that point, but Marie’s offer had made us feel loved and supported — the importance of which cannot be overstated after a lonely four-and-a-half year battle with infertility. Our family and friends rallied around us all, waiting with bated breath to see if it would work. And now that it has worked, our daughter will get to meet the nice lady, “Aunt Marie”, who helped mommy and daddy have her (and who has already mailed her a Christmas present for this year!)

Should we tell other people?

I read somewhere that 10% of IVF pregnancies in the US use egg donation, which is non-negligible. Yet when we first started considering this path, I’d never heard of anyone who had done it. Marie told me later that before I mentioned needing donated eggs (not hers, but generally), she didn’t even know it existed.*

It was a scary new path to embark on, and one of the things that helped my husband and I decide to pursue it was finding other women who had children through egg donation. Seeing the relationships they had with their children — and how their children (some of them now adults) were thriving — gave me hope, and it made me want to give back in the same way by sharing our story with a wider community. In the words of a friend of mine, I wanted to help those who came after us by making the path a little less scary.**

With that said, it’s not like there’s a banner flying over our house saying “Come see the donor egg baby!” I would love to show my face on here, as well as that of our baby (because guys, she’s gorgeous), but for the sake of our daughter, I’ve made the choice to keep our identities semi-private. (This may come as no great surprise, but my name isn’t really ‘Allie’, and our egg donor’s name isn’t really ‘Marie’.) Because Marie and I both post about it on social media, it wouldn’t be too hard for mutual friends who don’t already know to make the connection. But while I don’t plan on volunteering additional identifying information to the world in general, it’s my hope that our story will help other people even if all of my Instagram photos feature giant emoticons plastered over our faces.

Every case is different

Would we have done things differently if we had used an anonymous donor? Or sperm/embryo donation? Maybe. Maybe not. One thing I’ve learned is that it’s difficult to say how you might handle a situation until you’ve really experienced it first-hand. And on top of that, every particular case really is different.

Since we made the conscious choice to be so open about our particular story from the beginning, we are running the risk that some people may indeed look at our daughter differently. I can’t control what those people may say to (or about) her in the future, and like any mother, that thought pains me. But I hope that whatever others may say, our daughter recognizes that her differences make her even more special. Because it’s ultimately a story about love, and how so many people came together just so that she can exist.

xx

* Marie actually volunteered to be our surrogate before she knew exactly what our fertility issues were. I explained that the oven was working just fine — I just didn’t have any dough.

** Like me, Marie is also excited to educate others and recently gave a presentation about egg donation at the high school where she teaches. Just imagine if she inspired even one student (or teacher) to donate eggs in the future!

The genetics of my donor egg baby

Accepting that we had to use donor eggs during our IVF struggles was extremely difficult, to say the least. I’ve written previously about the grieving process that necessarily goes along with this ultimate admission of one’s infertility — how it feels like a part of you has died, and the post-traumatic stress that can accompany it. And even though I’m extremely grateful to modern science that there was still a way for me to get pregnant, fully accepting that you’re a genetic dead-end is a long, emotionally complex process which I’m still working my way through.

To give one example: when our egg donor, Marie, was here a year ago for her egg retrieval, she was explaining to her 5-year-old how she was helping put a baby in my belly. “One day you, too, will grow a baby in your belly!”, she explained to her daughter.

“Hang on a sec”, I wanted to interject — feeling compelled to add a caveat that it’s not necessarily a given so as not to set unrealistic expectations for the little girl. But then I realized that she was right — the odds are that Marie’s daughter will have no trouble conceiving a child naturally, should she eventually choose to. That then led me to an uncomfortable truth: I was jealous. Of a 5-year-old.

Why it still stings

Even though I’m now very happily 39(!) weeks pregnant thanks to one of Marie’s donated eggs, the lack of a genetic connection between me and our future child is something that I’m still coming to terms with. I think there are two main reasons for this.

The first reason has to do with my husband. We’ve been together over 15 years now, and he’s basically the best man I know. When you are in a (heterosexual) relationship like ours, it’s natural to dream of one day creating a family together — making a kid that is half you and half your partner. It’s like the ultimate expression of unity and an awesome science experiment at the same time. You never dream of creating a child with a third person, as lovely as that person may be.*

The second reason is a bit more selfish. I’m no Mozart or Giselle B, but most of the time I like to think that I’m sort of a cool person. This is also totally natural — everyday insecurities aside, I think most people are partial to their own genetics. It’s therefore become a running joke over the course of this pregnancy that whenever I’m feeling particularly pleased about some totally unimportant aspect of myself, like my exceedingly low blood pressure, or my yogic lung capacity, my husband and I will turn to each other with sorrowful eyes (mine serious, his teasing) and say “What a waste!”

Finding acceptance

Fully accepting the lack of a genetic connection with a donor egg baby is not something that happens overnight, and I think the most important thing is to allow yourself time. As I’ve experienced my own feelings about it evolve, I also wanted to share some thoughts that have helped me find acceptance.

The first and most obvious point is that genetics don’t make a family — love does. (This is also true for sperm donation, embryo donation, and adoption.) I’ve heard again and again from parents of non-traditional families that once you hold the baby in your arms, nothing else matters. You certainly won’t love the kid any less. From the very beginning of this journey — when we first made the leap to egg donation — this thought has comforted me.

Then there is the whole nature-vs-nurture point, where there is increasing evidence that nurture plays a huge role in many aspects of development. For egg donor babies carried in the prospective mother’s own uterus, the latest research in the exciting field of epigenetics even suggests that these environmental effects start in the womb. This means that although the baby’s basic genetic blueprint didn’t come from me, my diet, lifestyle habits, and even genes (via MicroRNAs) do influence which traits in the baby actually ‘turn on’.**

(Yes, I know I just got done saying that genes don’t matter, but this is still pretty cool.)

Another thing that has helped me is something I’ve mentioned before in the context of deciding to use donor eggs in the first place. In particular, I used to worry that I would get sad if our baby looked just like Marie (as beautiful as she is) because it would remind me that we weren’t actually related. However, my husband (smart man) made me realize that I needed to change my perspective. Instead of seeing the lack of a physical resemblance as a painful reminder of my infertility, I should instead see it as a reminder of the amazing gift we’ve been given. This slight change in perspective has helped me immensely.

Last but not least, finding the humor in the situation never fails to help. Just as I sometimes feel particularly pleased about some aspect of myself, there are other traits that I’m decidedly less enthusiastic about, like my terrible eyesight, or my somewhat unfortunate tendency to occasionally drool on myself in broad daylight. Whenever one of these unpleasant traits come up, my husband and I will turn to each other, half smiles on our faces, and say “Thank goodness those genes aren’t being passed on!”

xx

* And luckily for us, Marie is extremely lovely, both inside and out.

** So, unfortunately, that drooling gene may not be quite out of the picture yet.

How we made the decision to use donor eggs

Now that I’m nearly 27 weeks pregnant(!), I’ve gotten a few private messages lately from women in the infertility trenches asking me things like how we made the decision to use donor eggs, how we decided between anonymous and known donation, and how the process compared to non-donor-egg IVF. I actually love getting these questions, because if I can help other people by sharing our experience, it honestly makes it all worth it. (Well… almost worth it… I’m no masochist.)

So for those who are currently considering donor eggs themselves, or those who are just curious, I thought I’d write a series of posts attempting to answer these questions. I’ll start by sharing how the decision process went for our particular case, with the acknowledgement that each case is different, and therefore our case may not mirror yours.

How did we make the leap to donor eggs?

I’m one of those people who researches the hell out of everything, so as soon as we learned that I had premature ovarian failure, I basically already knew that we would end up using donor eggs. To be clear, our OB-GYN here in Holland didn’t actually use the phrase ‘premature ovarian failure’… However, she told us that I had the hormone levels of a menopausal woman despite being 34 at the time, and then once we confirmed how my ovaries were responding to IVF (i.e., they weren’t), I put two-and-two together.

Of course, we still tried my eggs three times, which took quite a bit of effort — we had to talk the infertility clinic we’d been referred to into even doing a second IVF attempt after only getting a single egg the first time. This may be surprising to some people (‘Isn’t helping people get pregnant sort of the whole point of infertility clinics…?’), but the way they explained it is that with such a poor response, the risks of IVF start to outweigh any potential benefits.

That second attempt, we got three (poor-quality) eggs and transferred two — neither of which stuck.

Then we had to switch clinics (and countries) to get to a third try. The new clinic had me on different medication (both for the hormone therapy and for sub-clinical hypo-thyroidism), and I had also drastically altered my diet, so I was kind of hopeful that we’d get a better outcome. With that said, we went into it knowing it was likely our last shot, and the clinic suggested that we do a 5-day embryo transfer instead of 3-day like my other attempts, with part of the reasoning being that this might help us get ‘closure’. Indeed, when the single egg that fertilized (of a measly two retrieved) didn’t even survive to transfer day, that did help us close that chapter.

Was that an easy decision?

No — obviously that was still devastating. Just like normal, fertile people (lucky bastards…) can’t truly understand what it’s like to go through infertility/IVF, I think that those doing ‘regular’ (non-donor-egg) IVF can’t understand what it’s like to ‘give up’ on your eggs. (The same holds for the use of donor sperm, donor embryos, surrogacy, and etc.) For my husband and I, making the leap to donor eggs was a far bigger leap than ‘just’ doing IVF in the first place.

If undergoing ‘regular’ IVF was the equivalent of a Bachelor’s degree, accepting that we needed donor egg IVF was the equivalent of writing a doctoral dissertation.

With that said, I knew that I just really wanted to experience being pregnant, and if it took donor eggs to get me there, I was willing to make that leap. Luckily, my husband felt the same way.

Considering the whole spectrum of cases, I can imagine that making the decision to use donor eggs or not would be harder for those whose ovaries aren’t as geriatric as mine apparently are. When you’re only getting a tiny handful for poor-quality eggs each cycle, like we did, the decision basically makes itself for you. If you’re getting a larger number of eggs, or the reason behind the failed implantation is less obvious, the decision is much less clear-cut, of course. If this applies to you, then my advice would be to talk to your clinic and decide ahead-of-time if a non-donor-egg cycle will be your last one. That way, you can grieve appropriately during the cycle.

How are we feeling about it all now?

So now that we are finally pregnant through donor egg IVF (i.e. DEIVF), how are we feeling about our decision? The short answer is that we feel super excited and ridiculously grateful. Before it worked for us, I used to worry that any eventual DE pregnancy would be bitter-sweet, with each exciting milestone marked by an equal amount of grief for the lost opportunities. (I’m clearly not at all dramatic/prone to melancholy.)

Now that we have made it to the other side and things appear to be going well, I’m happy to report that I am just thrilled to be pregnant, and I don’t even care that it took donor eggs to get us here. Obviously, it being a donor egg pregnancy does raise unique issues — which I will continue to explore in this blog — but the important thing is that my husband and I are 100% happy with our decision. If anything, it just makes us both even prouder of what we’ve endured to get here.

xx

The emotional impact of premature ovarian failure

It’s almost time to break out the celebratory raw herring! Why? Because we are officially less than one week away from the arrival of our egg donor, Marie, in Holland. After so much intense preparation, I still can’t believe it’s finally actually happening. And while the odds are that it won’t work, I’m going to try to do my best to stay cautiously optimistic during this next IVF cycle.

With that said, the cycle hasn’t quite started yet, and I’m currently in a plane somewhere over Greenland, which always makes me emotional (the being-in-a-plane part, not Greenland…that would be weird). I understand this is actually a common phenomenon — perhaps because our tiny monkey brains still can’t process the modern miracle that is air travel. I already (somewhat embarrassingly) found myself nearly in tears while watching Blockers, a movie which is decidedly NOT a tear-jerker. So perhaps it’s a good time to talk about something that’s been on my mind a lot lately: What is the emotional impact of a premature ovarian failure diagnosis?

Maybe it’s hard to understand if it hasn’t happened to you, or if you don’t want kids, but finding out suddenly that you will likely never have biological children is pretty rough. However, I hadn’t considered that it might be even more serious than that until I was researching premature ovarian failure (POF) for a recent post exploring what causes it. One of the first places I looked, Wikipedia, had this to say about emotional health in those who had been diagnosed:

The most common words women use to describe how they felt in the 2 hours after being given the diagnosis of primary ovarian insufficiency are “devastated, “shocked,” and “confused.”[8] These are words that describe emotional trauma. The diagnosis is more than infertility and affects a woman’s physical and emotional well-being.[1] Patients face the acute shock of the diagnosis, associated stigma of infertility, grief from the death of dreams, anxiety and depression from the disruption of life plans, confusion around the cause, symptoms of estrogen deficiency, worry over the associated potential medical sequelae such as reduced bone density and cardiovascular risk, and the uncertain future that all of these factors create.

I knew most of this already from personal experience, of course, but I was struck by the phrase `emotional trauma’. As in, damage to the psyche that occurs as a result of a severely distressing event, and which can even lead to post traumatic stress disorder. I was further struck by the mention of the words “shocked” and “devastated”. Those words sounded familiar… I went back to the first post I had written, where I described receiving my diagnosis, and I used both of those words to describe it. It made sense actually — it was a trauma. Come to think of it, it was definitely in my top-five, and probably even top-three. For some reason, just knowing this has helped me to feel less like a victim, and more like a survivor.

How to get through it

I could talk more about the other physical and emotional consequences of the diagnosis listed in the Wikipedia article — and I’m sure I will at some point — but in the meantime, what else has helped me, personally, to get through it?

One thing that has helped me tremendously, of course, has been Marie’s offer to donate. Going through something like this can be an extremely isolating experience, especially with the constant bombardment of pregnancy announcements and baby picts that compose 90% of my social media. Knowing that someone is willing to go through all this for us is huge, and I’ll be forever grateful even if it doesn’t work.

I realize, of course, that not everyone has a big-hearted (& big-footed) Marie in their lives, so I also wanted to emphasize a few things that my fellow POF-sufferers can do for themselves:

  1. “Come out”. Sharing what you’re going through with friends — and maybe even more generally — can provide you with a crucial support system. If nothing else, it will stop relatives from asking you when you’re having children.
  2. Take care of yourself. The term `self-care’ is usually a bit touchy-feely for me, but it’s actually important in this case. Personally, I recently turned down a request to give 10 hours of lectures at a summer school (which I would also need to prepare from scratch). Another colleague made me feel guilty about this at first, which was particularly confusing because they know what I’m going through. But you know what? They can ask someone who ISN’T coping with an emotional trauma while also undergoing their 4th IVF cycle.
  3. Give yourself credit. Acknowledge that what you’re going through is hard, and make sure to give yourself proper credit. Couples split up and people quit their jobs over this stuff. If you’re at least making it through the day, you’re freaking killing it.

What causes Premature Ovarian Failure?

Premature ovarian failure (POF) is a devastating diagnosis for the 1% of women it affects. In medical-speak, it’s a gynecological endocrine disease characterized by the exhaustion of ovarian follicles before the age of 40. In normal person-speak, it’s when your ovaries decide to throw in the towel and simply stop producing eggs.

Women with this disease have a very low chance of ever having biological children, even with the help of in-vitro fertilization (IVF). This is why, after my diagnosis at 34 — including three failed IVF attempts — we’re currently preparing to use donor eggs from my friend Marie. But how did I happen to win this infertility lottery in the first place? In other words, what actually causes premature ovarian failure?

The short answer is that medical professionals usually have no idea. The long answer is that there are a number of possible causes for the disease*. These include (but are not limited to):

  • Genetic disorders: Chromosomal defects from certain genetic disorders can cause POF. Examples include Fragile-X syndrome, where a woman’s X chromosomes are fragile and break, and Turner’s syndrome, where the second X chromosome is partially or completely missing. (Fragile-X syndrome is also one of the diseases that they screen for in potential egg donors.)

  • Cancer treatments: Common cancer treatments like chemotherapy and radiation therapy can damage the genetic material in cells, causing POF in cancer survivors. POF is already a terrible thing to face on its own, much less after battling cancer. If there’s any kernel of goodness hidden in there, it’s that this particular cause of POF is becoming more common as cancer survival rates increase.

  • Psychological stress: Studies have shown that psychological stress, like experiencing a trauma or chronic anxiety, can cause changes in reproductive endocrinology. This cause is difficult to identify if you’re trying to self-diagnose, particularly because POF itself can also cause anxiety, leading to a chicken-or-egg scenario where it’s difficult to tell what came first.

  • Autoimmune disease: In a small minority of cases, a woman may have an autoimmune disease that produces antibodies against her ovarian tissue. This can harm the follicle and permanently damage the eggs contained within. It’s not known what triggers such an immune response, but exposure to a virus is one possibility.

How often is the cause identified?

While the issues listed above are known to cause POF, the truth is that the vast majority of cases (90%) are idiopathic, which is a fancy way of saying that we have no freaking clue what causes it. This is also the case for me. It is estimated that 40% of cases are genetic, and with my mother’s history of Hashimoto’s (an autoimmune disease), and my grandmother’s thyroid issues (plus my recent hypothyroid diagnosis), I wonder if there isn’t some connection there. But while I can speculate all I want (and believe me — I do), I have also resigned myself to the fact that I will likely never know.

*Disclaimer: Please keep in mind that while I am a doctor, I’m not one of the medical variety. The information here comes from personal experience and hours of sleepless googling.

What genetic diseases will our donor be screened for?

In just a few short days, our egg donor Marie and her husband will be flying in from the US for her screening appointments in Belgium. In addition to meeting with our doctor, a psychologist, the coordinating midwives, and etc, a big part of the jam-packed day will be a meeting with a geneticist. This geneticist will be searching for any genetic diseases that may preclude her from donating her eggs to us. But what genetic diseases will they be screening for, specifically?

There are four tests she needs to have, and the only one she’s had so far is the chromosome analysis. As I described in a previous post, Marie found out that this test can be done much more quickly in the US than Belgium, and she even convinced her doctor there to write up a lab order. However, we still weren’t sure if the results would come in before the screening appointments next week. We even had a bet about what would come back first: the results of the chromosome analysis, or her new passport. (I was betting that the passport would be the last to arrive, leaving us biting our nails until the very last minute.)

Well I lost…the passport came back first. But we also got the results of the chromosome analysis! All normal, as expected for that particular test given that she has two healthy kids. That leaves three more tests that she will need to have done when we’re in Belgium next week.

What are the additional tests?

The are three other diseases that they specifically screen for:

  • Fragile-X: A genetic disorder characterized by intellectual disability, behavioral challenges and certain physical traits like a long face. The likelihood of carrying this gene is higher for women, where approximately 1 in 151 are carriers.

  • Spinal Muscular Atrophy: A genetic disorder that affects the control of muscle movement. Approximately 1 in 50 people are carriers.

  • Cystic Fibrosis: A genetic disorder that causes severe damage to the lungs, digestive system, and other organs. Approximately 1 in 23 people are carriers.

We were a little shocked to learn the statistics for these, especially for cystic fibrosis. Even if Marie is totally healthy otherwise, and even though my husband would also have to be a carrier to result in the baby having a 1-in-4 chance of getting CF, they won’t let her donate if she’s a carrier.

Then is that it?

So if Marie passes all of these tests, then does she get the all-clear to donate? No, because as I’ve mentioned before, we’re apparently trying to create a genetically-flawless, award-winning baby.*

The geneticist will therefore also check her family history for a number of other inheritable diseases. They won’t say exactly what they’re looking for — I think partly because they know people would just lie if they knew. But I understand that a few of the ones on the no-fly list are breast cancer and other inheritable cancers, autism, and epilepsy.

If they do find any of those, then Marie’s out of the running, and it’s back to the drawing board for us. That would be extremely frustrating — to say the least — since most people with any number of issues can pop out a baby any time the mood strikes them. It would also be quite a blow since we had such a difficult time finding a donor in the first place. So let’s hope that doesn’t happen, and that we can move on to Stage 2 of creating this genetically-superior wonder-baby.

*(Unless my husband has any diseases, which they don’t care about in the slightest. It’s perfectly legal to pass down your own genetic problems to your baby. You just can’t give them someone else’s!)