Jab 1 — A mum’s dilemma

My phone went “ding”. That familiar almost-a-real-life-sound-but-actually-it-tells-me-I-have-a-text-message. I looked down at the SMS.

Ah.

My first COVID shot.

Tomorrow was the day.

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At first, when COVID vaccines started rolling out worldwide, I was sure I was going to get one. Especially after listening to “The Other Extinguishers” in an episode of This American Life where they explained how the vaccine was created and what it did. It made sense to me. Besides, there was no sense in rolling the dice whether me and my baby would get a mild or a bad case of COVID.

Then we got her diagnosis.

A gigantic deletion on the long arm of her 2nd chromosome — 19 million pairs, 2q24.3-2q32.1 to be exact. A syndrome so rare there was no name for it.

The most extensive research out there on 2q24.3 was only from a few years ago and was on 36 individuals. Not only that, but a lot of those they used for the study are missing way less DNA than Eloise is.

Soon after her diagnosis, I found a few facebook groups with other parents who had kids with Eloise’s same [chromosome] deletion. One group had kids with a mixture of outcomes, and another had kids who were on the much more severe end. When I mentioned in the severe-end group that Eloise’s 3 month vaccines were coming up, I heard story after story from parents about how their own little babies had seemingly been fine until they’d had their 3 month vaccines. Sadly, in many of them, the vaccines gave their little ones fevers, which then triggered severe, medicine-resistent epilepsy that came with the deletion of a particular set of genes called sodium channels. As seizures became the norm, their little ones never recovered. Several parents shared photos with me — from average looking babies before, to severely impaired after.

My heart hurt for these parents. And for us. At the time, I thought Eloise was missing the same genes. So after I heard their stories, I took a walk around our neighborhood, sobbing. This fate might be Eloise’s fate. What kind of life would that be?

Later I learned that the kids in the group with severe outcomes were all missing a specific gene that, we think, Eloise might still have. Our geneticist wasn’t sure. Which means Eloise might be all right. Or she might not. No one can know. But, likely, since she didn’t have an onslaught of seizures by the time she was 4 months old, she will hopefully be on the more mild end of her deletion. There are so few cases out there, though, we can never be sure.

Ultimately, though, hearing those stories shifted my perspective on vaccines for Eloise. Instead of “get her vaccines, that’s the safest way to protect her” it became, “the very thing that is supposed to protect her may destroy her, so what is within my power is to keep her away from them as long as possible, just in case.”

Sleeping Beauty’s parents destroyed every spindle in the land to protect their daughter from the prophecy that said she’d die when she pricked her finger on one. Herod the Great, ruler over Israel at the time of Jesus’ birth, ordered every child in the nation be murdered in order to stop the Magi’s prophecy from coming true that said the true king had been born.

Of course, neither were successful in stopping fate. But maybe I could be.

Why?

Because my job, as a parent, was to protect my baby and do what I could to give her the best possible outcome. I couldn’t do anything about the fact that she would undoubtedly be profoundly mentally disabled for life, but I could avoid a vaccine that might make the damage to her little brain much, much worse.

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Around the same time this past spring, COVID vaccines became available to the general population in Estonia where we live. Quickly, and almost to my own surprise, my initial enthusiasm to get myself vaccinated wore off.

At the time, I was pumping breastmilk for Eloise (I still am today, too), and it meant that when I got the vaccine, she would almost certainly be affected — be that good or bad. Suddenly, all I could think of was that if my little baby ended up with a fever as a result of the vaccine, we might lose her progress for forever.

Yes, it was true, that when many of these precious children on the severe end had brain scans in their first months, it showed abnormal EEG activity even before the seizures began — which meant the seizures would have been inevitable with or without vaccines. But even if that was Eloise, too — she’d never been scanned so we couldn’t know for sure — then maybe I could at least delay getting her first fever as long as possible and, thus, reduce the amount of inevitable brain damage that could happen as a result.

When the portal opened for vaccine signups, there was a rush in Estonia as everyone fought to get a spot. Brian and I watched from the sidelines at first as we talked and talked and talked. Finally, we decided that he’d get the vaccine and I would wait for a few months, in hopes that enough people would be vaccinated in the general population that it would become a non-issue. Besides, we rarely went out anyway. We couldn’t. Eloise was a lot of work.

When we ran our logic past our doctor, she agreed it was likely better for me to wait a few months, just in case.

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As summer rolled around in Estonia, COVID all but disappeared, just like last year. Mask mandates were removed, seemingly all of my friends got vaccinated, and life was almost normal. And it was easy to ignore the vaccine question, because the threat was minimal.

But, just like the rest of the world, as summer drew to a close, COVID cases — especially Delta variants — began to rise. And the Estonian government made a tough but fair call to introduce a COVID digital passport. In order to attend large indoor events or visit places with many people inside like the spa or a movie theater, a person would need to show that either they had previously had COVID, they were vaccinated, or they had had a negative COVID test in the last 72 hours. Another option might be a rapid COVID test on the spot, but, regardless, you get the picture.

As I thought about that solution, I began to feel deep appreciation for the goverment’s wise decision. Then, as I was feeling gratitude, it occured to me that if I somehow miraculously had the time and space on my hands to attend such an event or go to the movies, I would personally be unable to.

Because I was unvaccinated.

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Around the same time, a little boy who has almost the same chromosome deletion as Eloise was hospitalized with COVID. His mom, however, had done everything right. She’d quit her healthcare job to protect him, had been homeschooling both he and his siblings, had used PPE and hand sanitizer diligently, had kept the family mostly isolated, and had even gotten vaccinated at her first opportunity. Still, though, she had contracted COVID. And, still, she had inadvertently passed it on to her medically fragile son.

I kept thinking about him. He ended up in the hospital and, ultimately, okay. Thank God. But if his mom hadn’t been vaccinated when she contracted it, her viral load would have been much higher. And with a higher viral load transmitted to a medically fragile little boy, who knows what the outcome would have been. I’m not sure I even want to think about it.

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Something suddenly clicked in my head.

All this time I’d been trying to avoid the fever that might come (5% of babies did get a fever in an Israeli study) which might trigger medicine-resistent epilepsy in Eloise that she would never recover from (which might have been an inevitability anyway). But I wasn’t really thinking about the fact that, if she did contract the Delta variant of COVID, she would likely get a fever which would trigger those seizures if she was prone to them. And, on top of that, she would almost certainly be hospitalized with even more complications, let alone an even worse outcome.

Delta is super contagious. And it’s awful. Nearly every day my facebook feed has a friend in the US these days saying, “Please pray for my uncle/dad/granddad/pastor/cousin/godfather who is in the hospital with COVID.” And then, later, they change their profile picture to themselves and said friend, and link to their obituary.

COVID is no joke especially to those who are more fragile.

Eloise falls into that fragile category. Or, rather, if we can look at other kids like her we can assume she falls into that category. The reality is that contagious disease spread is at an alltime low in Estonia so she, thankfully, hasn’t really been tested yet.

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I reached out to a few friends and acquaintances in the medical field and asked for studies involving breastfeeding mums. But, really, my mind was made up — I just wanted some reassurance.

There wasn’t much out there. But what research I read seemed to say that the most likely time a baby would get a fever was 2 weeks after my first shot, and then again 1 week after my second.

In theory, we could try to mitigate the risk by giving her a fever-reducing medication. But that might mean medicating her constantly for over a month just in case the fever broke that day. I didn’t like that idea.

I tried to focus, instead, on the benefit that she’d be somewhat protected with the antibodies she’d get through my breastmilk.

Oh antibodies. Sigh.

Gosh I wished she was actually nursing. I’d read article after article by now that talked about the magic that happened in breastmilk via the spit feedback that came through nursing — antibodies tailor-made for baby in that exact moment and exact situation. I’d just have to hope that my generic, environment-tailored antibodies from exclusively pumping would be enough.

Yes, there was still a very real risk something bad could happen. The odds had been in our favor before and it hadn’t worked out (hello 8 IVF tries that result in a baby missing a ridiculous amount of DNA).

But there was an even higher risk that something bad would happen if either of us contracted the Delta variant — in Estonia, we were looking at at least a 1 in 10 shot one of getting COVID.

So, with a slight bit of hesitancy, I made up my mind to get vaccinated as soon as possible.

I logged in to our online, nationwide patient portal and signed up for the next time available.

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I walked into the city library on Tuesday, scanning for a sign that said something about vaccines. I spotted it and made my way into an auditorium full of socially-distanced chairs — all completely empty.

When I arrived and told the lady behind the table my name, she responded, “Let’s make you a new time.”

I blinked. A new time? What was wrong with now?

“Sorry, a new time?” I responded in Estonian.

“Yes, let’s make you a new time.”

She saw the confusion on my face. “Oh, is Russian better? Or English?”

Relief flooded my body. “Oh. Yes. English is easier. I’m American.”

She then pulled up a calendar and picked a timeslot a month away.

Ah ha — she had meant she wanted to schedule my second shot. So I had understood her words, just not her meaning.

She went down a list of what to do if I had a fever or the chills. I asked her if there was anything special I needed to do since I was breastfeeding my baby.

I left out the part about the fact that my baby, in fact, had never nursed. Other than for a month on a bottle-shaped nipple shield which I didn’t think counted. Or that I’d been almost exclusively pumping for nearly 7 months. Or that my baby was going to be severely mentally disabled for life. Was any of it relevant, anyway?

“Right after your shot, take your baby to your breast. Then wait around 3 hours and feed her again. If you can.”

I blinked. Eloise was at home with Brian, probably refusing to eat from her bottle at this very second. There was no way I could feed her immediately afterwards, as the lady had instructed. In that moment, I felt a little pang of jealousy for all those moms I’d see who had a hungry kid and just lifted their shirt to satiate their toddler’s hunger pains. That would never be us.

Oh well.

No need to have a pity party. I was lucky I had the support and encouragement to still be able to be pumping nearly 7 months later, especially considering all we’d been through. For that, I was truly grateful.

My mind drifted back to the scene at hand. I calculated silently in my head — I’d pumped 1.5 hours ago so I’d need to pump again in around 2 hours. That was a far cry from 3 hours. Well, it seemed I already had to ignore my very first “this is best for your baby” instructions.

We were off to a great start.

I went behind a black curtain where an older woman sat. In front of her was a table, sparsely covered with a smattering of medical paraphernalia and a small bowl of blue pins that said “Vaccinated.” The front table had pink ones and blue ones, both. I made a mental note to take one of the pink ones on my way out.

I took a deep breath, and sat, saying a silent prayer that we were making the right call. That Eloise wouldn’t end up with fever-induced seizures that couldn’t be treated with medicine. That my antibodies would pass to her and be good enough to protect her for when we, undoubtedly, ultimately encountered COVID.

And, then, it was over.

I stood up and dutifully found one of the many empty black chairs in the auditorium and sat by myself, setting my watch to vibrate at the 15 minute mark.

On my way out, I took one of the pink buttons sitting out on the table — feeling a sense of pride that I could wear one.

I finished a few errands in town and headed home, first confirming with Brian that, indeed, Eloise had mostly been refusing to eat from him all morning.

The gravity of what I had just done sunk in on my drive home. Sure, the chances of her getting a fever was only 5%. But, well, what were the odds of her missing that much DNA and surviving in the first place? Not a lot.

But I tried to focus on the fact that the chances of one of us getting COVID was far greater, and it would likely be way worse of an attack to her system. Any antibodies I could give to protect her would be worth it. I hoped.

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I made it home to a fussy baby.

Brian was a tad emotionally exhausted by then, so I took over. Just the day before she had had a bad reaction to a milk product we’d trialed on her, so Brian and I hoped that this was still the fallout from that.

The two of us spent the rest of the afternoon soothing and coaxing food into our little baby until, at some point — exasperated — I mused, “Gosh wouldn’t this be easier if she would just nurse.”

So, in an attitude of obstinance to match our fussy baby’s, I lifted my shirt and offered Eloise my breast.

And, to my utter and absolute shock, she took it.

There I sat with my almost 7-month-old baby who was legitimately nursing. I thought about all the articles I’d read that said antibodies were so much more finely tuned to a baby if they were able to nurse.

Holy cow.

Well, if there was any time to start tailor-making antibodies specifically for Eloise, then today would be the day.

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Epilogue.

It’s been 2 days since my shot.

I was expecting to be like Brian, exhausted the first night. In fact, I was even looking forward to having an excuse to nap the evening away.

However, much to my disappointment, nothing happened. Just a sore injection site.

So. Now we wait.

From what I can tell, she’s at highest risk in 2 weeks, and then again in 5.

Let’s hope she’ll be all right.

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Here are the resources I referenced earlier.

• Israeli study on breastfeeding moms and the Pfitzer vaccine
• Study in Spain on breastfeeding and antibodies with the COVID vaccine
• A nursing mom’s journey to try to find information on antibodies and breastmilk

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Post script.

The night before I got my shot, there was a thread in a group I’m a part of full of parents who have kids with rare chromosome deletions that asked about any side effects from the COVID vaccine given directly to the kids, especially to kids prone to seizures. There were no side effects noted in any of the cases.

Post post script.

Unrelated to COVID, earlier this year I was tested for blood-clotting problems. I had none.

Post post post script.

My understanding of genetics and the complications that come along with our daughter’s deletion is basic, at best. Misguided and ill-informed at worst. I’m sure I’ll have a much better, more accurate grasp of specifics in the future. But this blog post attempts to summarize and explain the best I can at the moment.