As an old woman, I am privileged to revisit past events with an objective lens. It was a different world then.
Early in the year, 2018: I was 38 years old and pregnant with my fifth baby. If you’ve seen one baby’s ultrasound you’ve seen them all, so my husband remained home with the other children while I attended the 12-week ultrasound alone.
Due to hospital renovations since my previous pregnancy five years before, the path to the Prenatal Diagnostic Center was completely unfamiliar to me. I passed a dejected-looking couple holding a packet of ultrasounds as they walked out the doors of the clinic into the hospital lobby. Immediately following them, a woman gazed lovingly at an ultrasound photo as she walked, nearly colliding with the backs of the teary couple. At least I knew I was in the right place.
I sat down and grabbed a copy of Fit Pregnancy to read while I waited. “Just what I need, another list of healthy pregnancy habits I will either be too tired or hungry to do,” I thought resignedly as I abandoned the magazine.
Within minutes, I was retrieved by a pleasant-looking woman whose badge read, “Nancy McNally, MS, CGC.” Under her name was the title, “Genetic Counselor.”
“Won’t we be doing the ultrasound first?”
She answered me kindly, “Not just yet. The first part of the appointment is where we go over your results from the non-invasive genetic blood tests performed at the midwifery clinic a few weeks ago.” Having endured five years of Mommy brain since my last pregnancy, it was difficult to remember the previous order of events, but I thought they had done the ultrasound first and then used the numbers to calculate the odds for different disorders. “Oh right,” I thought, “it’s because I took the NIPT that they have all the diagnostic information ready first thing.”
The room was small, barely fitting a sterile round table, four metal chairs adorned with geometric-patterned upholstery, a small plastic-covered sofa, a pamphlet rack with information about genetic conditions, and a box of tissues. Nancy offered me water and I accepted gratefully. As she began talking I glanced at the pamphlet rack and noticed one called, “The facts about ADHD.” I had one second to wonder why ADHD was considered a genetic condition before Nancy opened a folder with my test results and the question quickly slipped from conscious thought.
My brain is not one for numbers or statistics, so when Nancy first began talking, it took a minute for me to organize the details in my head. “So you’re saying the baby has no chromosomal conditions? And you know it’s a girl? That’s awesome! It’s been over a decade since I have had a baby girl in the house so I am really excited to pull the cute little dresses out of storage. Sorry, what were you saying?”
Nancy continued patiently, “It is correct that your baby has no chromosomal conditions, per se. She has the typical number of chromosomes and all of those chromosomes look perfectly intact. However, did anyone explain the new diagnostic capabilities of the test?”
“No, I thought NIPTs could only diagnose trisomies like Down syndrome and identify the sex.”
“That’s what they were able to do five years ago, but we’ve come a long way since then,” Nancy explained. “In 2017 one of the scientists working for Sequenom identified the chromosome that carries the ADHD gene. Not only that, but in identifying the gene they were able to add it to the diagnostic results of the NIPT.”
“There’s an ADHD gene?” I asked incredulously.
“Yes, it runs in families, right?” said Nancy. Right. She had my personal history as a mother with ADHD sitting in the folder before her on the table. “Do any of your other kids have ADHD?” she asked. I told her that no, it seemed not. “That’s very lucky for you!” she added.
“I am not sure what you mean.”
“Well, just look at the statistics. Most children with ADHD have learning problems and require special modifications in school. They struggle, you know? They are more reckless and more likely to be injured in careless accidents. The data clearly shows that when children with ADHD become adults, they are more likely to become drug addicts, be depressed, have trouble with relationships, and engage in reckless behavior. As such, they are more likely to die younger than their peers without ADHD.”
“Okay… why are you telling me this?”
Nancy looked down at the document with my test results, hesitated, then spoke: “Your NIPT results indicate that your baby will develop ADHD, based on the presence of the ADHD gene. Researchers have also recently found that when a parent has ADHD as you do, your child’s symptoms are increased tenfold. So despite the fact that you did well in school and function as a properly-medicated parent with ADHD, there is a good chance your child won’t. There is a chance your child will suffer greatly from this condition. Worst of all, she’s more likely to die early from drugs, recklessness, or suicide. If she’s lucky enough for none of that to happen, she will still need countless extra resources in school and health care.”
It was starting to sink in that there was a problem with my baby. I had walked into that office excited about seeing my baby’s heartbeat on ultrasound for the first time. Now upon receipt of this information, I was starting to feel numb.
All my life I had been beating myself up for being unintentionally irresponsible. With this prenatal diagnosis, I finally had a chance to make a responsible decision. I asked myself, would it be it better for society and the greater good if I terminate my pregnancy, and thus avoid bringing a child into the world who would be a magnet for bad luck and a drain of resources? But she’s my baby, I thought, and don’t I have a right to give birth to this baby with whom I already feel connected?
As if on autopilot, I went to the ultrasound room where they determined that my baby’s nuchal translucency was normal (no surprise considering her typical chromosomes). I thanked the technician and drove home to share the news with my husband.
Viewing those events through the 20/20 lens of a ninety year old, I know that the moment I considered terminating a pregnancy for a condition completely compatible with life but that can make life more difficult, my world view was beginning to echo the changing times. Those times called for people to do the “responsible thing” and end a pregnancy if the baby would be born with more than the acceptable level of challenges. What those parents didn’t know is how society would break down as a result.
First, the family began to disintegrate. One thing no one told those responsible parents was how much it would tear them apart every time they saw a child who appeared to have ADHD. They would view a hyperactive child bouncing through the grocery store as he regaled with tales of mythical creatures punctuated by intuitive questions, and wonder if their child would have been creative like that. The depression suffered from their loss would slowly chip away at their psyche until all of their other relationships were affected.
As NIPT use increased and the family unit dissolved, populations of people with ADHD began to disappear. The effects were unintentional but significant. What scientists failed to realize was that sister genes for creativity and empathy were attached to the gene for ADHD. While ADHD inched closer to eradication, the number of talented artists, teachers, architects, entrepreneurs, and entertainers significantly decreased until recently, in the mid-21st century, there was only a smattering left. It’s as if the flame flickered from society, and only a tiny spark remained on the wick.
Luckily, it wasn’t too late. It took more than just realizing the worth and value people with ADHD had in society. The world’s citizens, especially those in government and scientific leadership positions, began to admit that it is not only impossible to judge the worthiness of a person in utero, but unnecessary. Our leaders finally conceded that a person’s value is inherent and that the possibility of an individual requiring more resources than another is not a determining factor for whether or not that individual deserves to live. People began to see that one gene or one chromosome does not make the person–it’s the combination of all of them. And whatever the makeup of those genes, each person has something to give and a way to impact society that only God knows.
Little by little, the spark rekindled as people with ADHD were again welcomed into the world. Instead of worrying that their choice to continue an ADHD pregnancy would create a burden, people were urged to continue their wanted pregnancies and let the chips fall where they may. Subsequently, the ethics committees for all nations decreed that prenatal diagnostic testing was to be used for the advancement of corrective surgeries in the womb, and outlawed the use of testing for discriminatory prenatal selection.
The effect of this decree on parents and families was immediate. The relaxed, accepting nature of pregnancy led to a generation of people less prone to stress and anxiety. Grief returned to its place as a way to process the natural end of life, devoid of the guilt parents felt for their decision to end a wanted pregnancy. Imagination and creativity narrowly missed being bred out of the human genome. Instead, the traits returned not only with greater force, but with greater acceptance and value as well.
Learn more about NIPT and how prenatal testing leads to discrimination here.
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