How we see the world shapes who we choose to be — and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective.
When I was diagnosed with CGD at three years old, the doctors kept using the term “CGD kids” with my mom because “CGD kids” didn’t often, at the time, make it past age 10.
Still, research into CGD has made great progress. By the time I was in college, there were cases of middle-aged men with CGD and with families of their own.
The connection between female carriers of CGD and lupus, on the other hand, remains elusive. But in the back of my mind, growing up, I held the knowledge that a flood of hormones, such as the onset of menstruation or pregnancy, could result in lupus flares.
As a child, I’d “only” been hospitalized a few times: with infections at three months and three years, and with pneumonia at fifteen.
The sun was bad for my lupus, and the antibiotics for my CGD made me even more sun sensitive, so I stayed inside a lot and fought with my mother over missing school field trips that involved being outside. It seemed as if it was the medication that was creating “lupus-like” symptoms: butterfly rashes under my eyes, joint pain, and headaches.
Sometimes I stayed home from school with a stiff hip, unable to get up from the floor. As I got older, I began to get debilitating. vomit-inducing migraines, another possible symptom of lupus.
I know there were other people with chronic conditions who were worse off, missing months of school while in the hospital or doing homework on the floor at home while their meds dripped down into them, but it still was difficult to deal with sickness as a kid.
Would a child beat the odds and avoid inheriting my condition?
After I left the hospital following a major surgery I had at age 19, I spent my summer vacation recovering.
“It took you 20 years to have a major hospitalization,” my doctor said, at one of many follow-up appointments. “It’ll be another 20 at least before another one.”
Maybe he didn’t phrase it that way — it was meant to be optimistic, not to imply that I was a ticking time bomb — but that’s how I remember it.
Later, Dr. B.* suggested I shouldn’t wait until I was walking down the aisle to let potential life partners know what CGD means for family planning.
I’d long assumed I’d simply not have children. But when I met Michael, the man I’d marry, the urge to mash our genes together into a little baby unseated my stoic resolve.
How powerful it suddenly seemed to create a whole other life with the human I adore.
There were smaller desires, like wanting to see Michael’s big brown eyes and long eyelashes, my cheeks and curls, all mixed up in our progeny. And there were bigger, more irrational desires, like wanting his humor, intelligence, and keen empathy passed on — as if these traits were pure nature, as if they couldn’t be nurtured.
We thought optimistically we could beat the odds.
Dr. B. walked us through the genetic probabilities of having a boy with zero working white blood cells (25 percent), or a girl, like me, a wildcard carrier whose levels of working white blood cells waver (25 percent).
We had a 50 percent chance of a CGD-free child. A coin flip.
We didn’t really discuss lupus, which seemed like less of an issue and which was not Dr. B.’s focus.
There were serious possibilities to consider in raising a chronically ill child: frequent hospitalizations, missed school, developmental delays, lifetime insurance caps.
I knew my own difficulties as a chronically ill child could be just the tip of the iceberg.
There was worse news, thanks to a new kind of test, that showed that my particular gene mutation is on the severe side.
So, while things had been relatively mild for me, there was a higher chance that a child of ours with CGD could face even greater difficulties.
We also had to contend with lower life expectancies, a hurdle I wasn’t sure I could manage as a mother, though every year, new developments make managing CDG easier. I’d even read about an elderly woman in the UK discovered to have CGD.
Once we covered the risks, Dr. B. went over our family planning options: pricey in vitro fertilization (IVF), which meant selecting just the right egg; testing in utero to decide whether to continue the pregnancy or to use that information to prepare for a chronically ill child; or waiting and seeing, and testing at birth.
For our potential newborn, there was the possibility of a bone marrow transplant too, which would be very painful, but which could cure CGD. The newborn would not remember the pain. But the newborn would be in pain.
Could my body even handle pregnancy or parenthood?
I was so focused on having a baby, I hadn’t yet paused to consider how pregnancy could impact my own health.
Pregnancy could incite a lupus flare, which could create debilitating fatigue and kidney problems.
Pregnancy would require being off the antibiotics that have prevented serious infection, from three months prior to trying to conceive all the way through to breastfeeding, if I chose to do that.
And being sick while pregnant puts the fetus at risk too.
But Dr. B. assured me that people like me do have children and are fine. Since I have an excellent support network, he sent me off to make a baby.
It still seemed risky.
Another doctor advised me to set a time limit for how long I was willing to try to conceive, because the longer I’d be off my meds, the longer I’d be at risk.
This seemed practical, reassuring, and grim.
Any way I sliced it, I felt guilty and selfish: not having a biological child because I was scared of the health risk seemed selfish and putting my body at risk in order to replicate our genes felt selfish too.
Round and round we went, through a cross-country move from New York to Seattle, through graduate school, through buying a house.
My gut said no to bioengineering, no to surrogacy, no to trying to conceive but terminating if. It all seemed wrong.
One night, I dreamed I was enormously pregnant and cradling a bag of IV antibiotics, hooked up beneath my clavicle as it had been for months back when I was 19. That settled it.
On our sixth wedding anniversary, Michael and I went to our first adoption information session.
We chose to pursue domestic open adoption. International adoption and closed adoption came with too many question marks.
There were six months of paperwork followed by nearly three years of waiting to get picked by a birth family.
We’re still waiting.
It’s hard to wait. You can’t help but wonder: What’s wrong with us? Is it me?
I know the stresses of parenting may be hard on my body, but this is but one variable among many, and I have a strong support system in place — Michael, our parents, great doctors.
Was it any simpler this way, my Seattle dermatologist asked? We were discussing new treatment possibilities for my lupus, including Thalidomyde, which can cause serious birth defects and requires frequent pregnancy tests.
No, of course adoption is not simpler.
Any pregnancy for any woman comes with risks. And adoption comes with its own risks and heartaches.
But we’re not rocking the boat with the medications that keep me safe, and we’re going to provide a loving home for a child who needs one.
* The doctor’s name has been changed.
Anca L. Szilágyi’s debut novel is Daughters of the Air (2017), which the Seattle Review of Books called “a creation of unearthly talents.” Her writing appears in the Los Angeles Review of Books, Lilith Magazine, and Confrontation, among other publications. She is the recipient of awards from Artist Trust, 4Culture, Vermont Studio Center, and elsewhere. Find her at ancawrites.com.