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.

Should I use a known or anonymous egg donor?

For those brave infertiles who have gone through the necessary grieving process and decided to make the leap to egg donation, choosing between known and anonymous donation is usually the next big decision that needs to be made. I’ll say up front that in our case, the decision was essentially made for us. This is because we were told that an anonymous egg bank wasn’t really a thing in the Netherlands, and we found out that while our Dutch insurance still covered us in Belgium, we weren’t allowed to use the egg bank that does exist there. This was crushing, to say the least.

There were a few reasons we had hoped to at least have the option of anonymous donation. For one thing, I was mildly concerned that if the kid turned out to look exactly like someone we knew, this would be a constant painful reminder of my infertility (as well as fuel for gossip among those who didn’t already know). There was also the concern that it would negatively affect our relationship with the donor. Would I be jealous of their genetic connection? Would they become overly attached to the child? What if they, or their family, became overly involved?

But the biggest reason we initially hoped to use an anonymous donor was that we didn’t think a known donor was even an option for us. Nobody we knew had offered to donate, and it seemed WAY too big a thing to ask (“How has the weather there been? Would you mind having surgery to give us your genes?”) Very few of our friends met the criteria set out by the clinic, and we doubted that those that did would be willing or able to put their lives on hold to fly to Europe, where we had recently relocated from the US.

Taking all of these factors into consideration, anonymous donation seemed like our best (and only) bet.

Will my egg donor baby look like me?

I was never very worried about finding a donor who looked like me, but this can be another benefit of anonymous donation for many women. In particular, some clinics will offer egg donor matching based on physical characteristics. If you aren’t lucky enough to have a sister or close relative who’s willing to donate, this can be the best way for your baby to have a chance of resembling you.

Just to play devil’s advocate for a minute, I actually had the opposite concern — that if the baby looked too much like me, people would be constantly commenting on the likeness. Wouldn’t comments like that be an unwelcome reminder that I have raisins for ovaries? Worse yet, since I’m such a stubborn advocate of infertility awareness, would I feel the need to launch into a diatribe at every innocent ‘She has your eyes’ remark? I could see that getting annoying (for both them and me) real quick.

Benefits of known donation

While my husband and I were initially planning on using an anonymous donor, we could also see the possible benefits of known donation. For one thing, the kid would never have to wonder where they came from, because the donor would already be in our lives (assuming they were happy to be identified). Even with an anonymous donor, the increasing popularity of DNA testing from companies like 23andMe or Ancestry.com means they may not be anonymous forever. What if the child wanted to reach out to learn more about their heritage, and they were rejected?

Another potential benefit of known donation is that you have more information about the donor. If you’re worried about the child inheriting specific qualities, knowing the donor may give you peace of mind. (Although I think any woman who donates eggs has a heart of gold, which is arguably the most important quality.)

Our experience with known donation

In the end, our hopes of using an anonymous donor were dashed when we learned that a known donor was our only option — at least if we wanted to have the procedure partially covered by our insurance. Fortunately, we were extremely lucky that my childhood friend, Marie, volunteered. Marie and I actually share quite a few characteristics (physical and otherwise), which is just icing on the cake. We were even luckier that we managed to work out the ridiculously difficult logistics that accompanied a donor traveling from overseas. (This was, in no small part, thanks to the help of our awesome Belgian egg donation nurse.)

There’s no doubt that if an anonymous egg bank had been available to us, I’d be singing the praises of anonymous donation. Since known donation was our only option without breaking the bank, I’m so grateful to be here singing Marie’s praises instead. When all was said and done, I think the emotional support we felt from Marie’s offer was probably the biggest advantage of having a known donor. And as my husband wisely pointed out, if our kid turns out looking exactly like a miniature Marie-clone, it will be a beautiful reminder that someone in our lives cared enough to literally give us a child.

xx

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

Pregnancy after infertility

Apologies for the radio silence, and rest assured that it’s not because anything has gone wrong. It’s partly because I’ve been really freaking busy with work and visitors, and also partly because I’m still figuring out how to talk about pregnancy in an infertility blog.

First, there are the questions about my blog name/Instagram handle. Then there’s the matter of adjusting to a new reality after such a long road. And finally, there’s the fact that I still don’t look or feel particularly pregnant. Let’s tackle them each in turn.

The formerly bunless oven?

“You’re not bunless anymore! You’ll have to change your name!”

I can’t tell you how many times I’ve heard this over the last couple months. The thing is, this donor egg IVF pregnancy — while a scientific miracle — doesn’t change the fact that I’m infertile. I don’t mean that in a mopey please-feel-sorry-for-me way, but as a matter of fact. Obviously I feel immensely lucky that modern science ultimately still made pregnancy possible for us. Nevertheless, that doesn’t just erase everything it took to get here.

There’s also the issue of ever having another kid, assuming this one makes it out alright. We’re extremely fortunate to have three more frozen embryos from Marie’s eggs, which is a luxury many people don’t have. Still, if we ever wanted to try for a 2nd — a decision most couples make over a casual dinner, or not at all (#bonusbaby) — that means more hormone therapy, long drives to Belgium, and potentially even finding a new egg donor in yet another foreign country to start the whole process from the beginning.

So in summary:

  • Super grateful to have gotten where we are today
  • Still definitely keeping the name.

Fitting in with the ‘fertiles’

Transitioning from the infertility community to the pregnancy community has been strange, to put it mildly. Many people assume that the transition happens instantaneously the moment you get the news, which couldn’t be further from the truth. Going through what we did was a massive emotional and physical burden — I didn’t just magically wake up pregnant one morning like all the other women in my pregnancy yoga class. I feel like a warrior among lottery winners, and coming to terms with the full extent of this new reality will take some time.

One of the ways this manifests is in the way I feel comfortable talking (or not) about the pregnancy. I’m not the type to gush about baby stuff or write carefree ‘Lovin’ pregnant life!!’ posts anyway, but this has made me probably even less so. Part of this is because I’m super-conscious of all the couples still struggling — I’ll be the first to admit that pregnancy-related posts were a big trigger for me during our multiple IVF attempts. But it’s also because it’s hard to endure so many years of failure without experiencing a little bit of post-traumatic stress. When you finally get something that you’ve fought for for so long, it’s natural to treat it more seriously than those who ended up there by chance.

Nothing to see here

The final reason I haven’t posted much is that even now at 17 weeks, I still don’t feel (or look) particularly pregnant, and not much has been going on. We had two more ultrasounds at 10 and 12 weeks when I tapered off the estrogen and progesterone, but everything looked perfectly normal. We also had another small bleeding scare at around 12 weeks, but thankfully nothing more since. The genetic testing came back with no evidence for Down’s, Edwards, or Patau syndromes. In addition, my blood work all came back looking excellent, and my blood pressure has always been extremely low. Aside from the whole prematurely-failing-ovaries thing, I’m really the absolute picture of health. Honestly, the most exciting thing to happen during the last couple months was learning that my blood type is not O+, despite having believed that my whole life. (My real blood type is apparently A+, which seems perfectly fitting if you know me at all.)

Since everything seems to be going well, we finally announced our pregnancy to our wider network a few weeks ago. So in case you haven’t already seen it, here’s our long-awaited pregnancy announcement featuring all of the used needles from our IVF attempts:

“Today we want to introduce a project that we’ve been working on for over half a decade*. After a very difficult journey, including 6 attempted IVF embryo transfers, 5 medicated (and >55 unmedicated) two-week waits, 4 separate egg retrieval surgeries, including 3 for Allie in 2 different (foreign) countries, and ultimately the generosity of 1 amazing friend who donated her eggs, we are happy to report that we are finally expecting our miracle baby. *This is longer than it took me to get my PhD in Physics. I think I should get to put this in my tenure report.”

A poor quality embryo success story

Last week, after what has been a 5+ year battle with infertility culminating in a donor egg IVF pregnancy, we had our first ever ultrasound not at a fertility center. Instead, we went to a regular old midwife practice…like normal people. I know some IVF’ers who have felt out-of-place when they make this transition, as if they still don’t belong. I kind of felt the opposite, to be honest — like after the number of ultrasound wands I’ve had shoved up my hoo-ha to get here, they should present me with some sort of elite membership card.

With that said, we went into the appointment with significant trepidation. I’d had a non-negligible amount of red spotting/bleeding two days before, which left me completely panic-stricken. Combined with the strong cramps that started the next day, things weren’t looking so good. “I don’t think I’m strong enough to go through a miscarriage too” I cried pitifully to my husband from my perch on the toilet.

You see, what’s been in the back of my head this whole time is the knowledge that the embryo we transferred was not the best quality. It was rated a 3BC before freeze, and had developed into only a 5CB upon defrost. The number is the stage of development, and the letters (A–D) rate the appearance/quality of the inner cell mass (which becomes the baby) and trophectoderm (which becomes the placenta), respectively. Since both things are required to make a baby, both grades are important. For a 5-day blastocyst transfer, the ideal grade is therefore 5AA. Since D-grades (=poor) aren’t even frozen, this meant our embryo barely made the cut.

While you have a chance with any embryo, studies show that the quality of the embryo correlates strongly with both the chance of implantation and the ultimate live birth rate. The best quality (5AA) embryos have a pregnancy rate >60% and a live birth rate >50%. With the embryo I transferred, on the other hand, I had only a ~30% chance of a positive pregnancy test, and only a ~15% chance of a live birth. In other words, although I had managed to beat the odds and become pregnant, my chance of miscarriage was a whopping 50%.

To make matters worse, those statistics were compiled for ‘ideal’ 5-day blastocysts, but our little dude/dudette didn’t make it to blastocyst until day 6. That means it was growing at a slower-than-normal rate, and that our true chance was likely even more pessimistic. Combining these statistics with my sudden bleeding and cramping, my husband and I went into our first pregnancy ultrasound unsure of what we would find.

The 8-week ultrasound

After explaining our situation to the midwife and having her narrowly stop me from taking my pants off (…old habits…), I climbed onto the exam table for my abdominal ultrasound. I was in tears before the exam even started, so conditioned by our ‘journey’ to expect the worst. But almost immediately, she told us it was good news — she could see the growing embryo!

She then asked me to remove my pants for a trans-vaginal ultrasound (see!) and she told my husband he could get out his phone. (She had told him phones weren’t allowed earlier in case it was bad news…won’t fall for that twice.) The raspberry-sized embryo was measuring right on track for its age, and we could even see a heartbeat. Despite our worst fears, everything was progressing just fine.*

At this point, I should note that I’m still taking two different IVF medications: a form of estrogen (orally) and a form of progesterone (via vaginal suppositories). I assumed this was self-evident to the midwife, both because she knew it was a donor egg IVF pregnancy and because the progesterone leaks out in massive white chunks. I was therefore caught off-guard when she started delicately hinting that if I noticed any symptoms like discharge, itching, or redness, I should call my doctor. I smiled politely and tried to rack my brain (“Have I noticed any itching??”) when my husband piped up that I was on vaginal progesterone, to which she replied “Ahhhh, that’s what it is then.” From this, I learned two things: 1) They apparently don’t get many IVF patients, and 2) From the amount of white goo leaking out of me, she must have thought I had a vaginal infection to rival all vaginal infections. So that’s not embarrassing at all.

Success with a poor-quality embryo

Technically, our embryo wasn’t poor-quality, it was fair-quality. Still, this seemingly minor distinction didn’t ease my anxiety during the two-week-wait when confronted with the dozens of ‘Perfect 5AA!’ embryos that my fellow IVF’ers seemed to post about online. Perhaps there’s some bias where people only post about the grade if it’s good?

Since I had such a hard time finding success stories for anything less than BB, let me add our own small success story here for those still in the trenches. Our embryo was only a 3BC (and by day 6, at that), our donor (Marie) was a month shy of 37, and while we won’t stop worrying ’til the very end, here is the 8-week scan of our bean.

* When I called Ghent to share the good news, the midwife I spoke to thought I had used the eggs of ‘my partner’. So either known donations also aren’t that common, or Marie and I come off as an adorable lesbian couple.

A different kind of two-week-wait

Trigger warning: This post discusses a positive pregnancy test, which means that I’m now one of those annoying ‘pregnancy bloggers’ I used to avoid like the plague. My sincere apologies.

You’d think that after finally receiving our first ever positive pregnancy test, the anxiety would have subsided. After all, this is what we’ve been working toward all these years, right??

Wrong — what we’ve been working toward is a fully formed, living and breathing baby, and we’re still quite a ways from having that in the bag.

I’m not complaining, of course — a positive test is the first necessary step, and it’s one that eluded us cycle and after for >60 months (not that I’ve been counting). But after working so hard for it, and waiting for so long, the very real possibility of a miscarriage has not escaped my notice.

I realize, of course, that the odds are in our favor — which is definitely the first time I’ve been able to say that in this whole painful process. But while being a member of the online infertility community has been a HUGE support, I think I may have finally discovered one downside. In particular, seeing daily posts from other women having trouble getting (or staying) pregnant has given me a heightened awareness of everything — and I mean everything — that can possibly go wrong*. (Having severe cramps in the middle of the night on Wednesday didn’t help either.)

2nd blood test (‘beta’)

Luckily, one good thing about getting pregnant through (donor egg) IVF is that we’ll be followed fairly closely through the process. Our mythical Big Fat Positive (BFP) was originally confirmed via an HCG blood test (‘beta’) over a week ago now, and last week we had a second beta to see how things were coming along.

In a normal pregnancy, the level of HCG in the blood should double approximately every ~48 hours. With an initial beta of 160, and a second beta scheduled for 6 days later, I was therefore hoping for a number greater than 1,280. From the amount of dizziness I was experiencing, and from peeing on sticks like a madwoman, I was pretty sure my HCG was rising — I just didn’t know by how much.

Have you ever waited to hear if the only pregnancy you’ve ever achieved — a pregnancy which took multiple years and donated genetic material — was still viable? I can tell you that it’s not completely stress-free, no matter how much you want to ‘Just enjoy it!’. After a tense day of glaring at my silent phone, and multiple communication issues between my local clinic and Ghent (one involving a fax machine, because apparently it’s 1995…), I finally got word from the nurse: My second beta came back at 4,815. I’m definitely still pregnant – or at least I was as of last Thursday!

Another two-week-wait

What they don’t tell you is that after you get pregnant, the two-week waits don’t go away — they just change into a different form. Now that the clinic is satisfied with my HCG level, our next step is a 7-week ultrasound. That means another two-week-wait, which I’m finding nearly as nerve-wracking as the first one.

Part of the problem is that ever since that bout of bad cramps last week (which were the night before my 2nd beta), the dizziness I experienced in the first few days has mostly gone away. Since that was really my only symptom, that means that I no longer feel particularly pregnant. I’m really hoping that it’s just the normal ebb and flow of symptoms, but it’s hard to know so many women who have experienced losses and not be a little paranoid. I may come to regret having said this, but right now, I would really kill for some morning sickness.

xx

*For example, if you are in the very early stages of pregnancy, I highly recommend NOT — under any circumstances — googling ‘blighted ovum’.