I tried to block out everything else and study the computer display alongside my newborn daughter’s intensive-care incubator. She had arrived that morning via an emergency Caesarean, over five weeks early. Initially, the medical team had reassured me that her general physical development was good. Now, however, with only the vaguest explanation as to why, they were preparing to conduct an in-depth heart scan called an echocardiogram. I sensed there was something the team wasn’t telling us.
At last I found it: a “Reason for Test” section on the computer monitor accompanying the test equipment. Among the unfamiliar acronyms and medical jargon, one piece leaped out: Possible T-21. I puzzled over that odd fragment of information for a few seconds, but quickly realized what it must mean: Trisomy 21, more commonly known as Down syndrome, in which a third copy of the twenty-first chromosome can cause many physical and mental developmental disabilities.
Adrenaline surged through me, my heart raced, and my first thought was: That is absolutely not true! You’re only saying that because my wife and I are in our forties. I wanted to lash out and demand: How dare you say that about my beautiful, sweet, perfect little girl! How dare you even suggest that she might be defective! You take that back, this instant! But I remained silent, frozen in my anger and denial, not wanting to cause a scene. Also, I was so certain that the medical staff was mistaken, I figured there was no point disturbing my wife’s peace of mind. Our baby would be proven “normal” soon enough. Might as well spare my wife the emotions I was now stewing in.
Later that afternoon, the physicians sat us down and explained that our daughter in fact had several physical characteristics consistent with Trisomy 21. The echocardiogram had been ordered because a large percentage of newborns with Down syndrome have heart defects — and the test had indeed found a large hole in our baby’s heart which would require surgery in a few months. They stressed that they could not yet give a definitive diagnosis of Down syndrome, as only a special test of her actual chromosomes, called a karyotype, could provide one. And those results could take weeks.
As the doctors continued talking, my incredulous mind went numb. Down syndrome? Open-heart surgery? The whole world seemed to be collapsing on me. You’re wrong. You’re completely wrong, I thought, and the karyotype will prove it. And I bet you’re exaggerating the size of the hole in her heart, too. I bet it’ll close by itself.
The next afternoon, we learned that our daughter would require surgery the following morning to correct a problem with her digestive system. The surgeon explained that this particular defect was common in newborns with Trisomy 21, “which we think your daughter has, and is further evidence that she probably has it.” I wanted to interrupt and tell him to “Stop…saying…that…about…her.” But I again remained silent, stewing in my emotions and going numb at the sense of being overwhelmed.
That evening, the last time I would see her before the surgery, I clutched my baby girl close and cuddled her for the longest time. As I poured out my heart, telling her how much I loved her, I promised her that no one would fight harder for her than her daddy. That I would pay any price, go any distance, and make any sacrifice that she needed for any treatment. I wanted to make myself microscopically small, so I could enter every cell of her body and snip out every extra twenty-first chromosome (which I now had to admit she probably did have).
The surgery was a success, but required a month-long hospitalisation. In addition to the many other prayers we offered for her, I made a secret gambit of my own: I began praying for the intercession of a holy prelate whose beatification had recently been announced. His canonisation would require a second certifiable miracle, and I promised I would send in full documentation if he could win for us a clean karyotype and a spontaneous patching of our daughter’s heart.
Eventually, however, the karyotype did bring an official diagnosis of Trisomy 21. And the heart defect did still require surgery. My wife, true to her sunny and optimistic nature, took all these diagnoses in stride. By contrast, I often found myself settling into a dreary melancholy. I felt engulfed by the rapidity with which our lives had completely changed, and the number of challenges we now faced. But my emotional rock-bottom was to come while browsing the toy aisle at a big-box retailer. All the baby and toddler models, smiling on all the product packages, had me surrounded. Every direction I turned, another perfect face. Another perfect body. Not a single one with the slightest hint of disabilities, or surgical scars. We’re the perfect ones, they seemed to taunt. The ones everybody wants. I felt almost dizzy, and overcome with the sense that the whole world wanted babies like mine far out of sight — or not even born. Deep in a funk, I wanted to sit down in the middle of the aisle and cry.
And that’s where I might have stayed, if not for the outpouring of support from family and friends. Countless people offered to watch or entertain our older kids, so my wife and I could be at the hospital and focus on the new baby’s needs. Some even came from hundreds of miles away, to be with us and show their solidarity. I spoke with my parents, and father-in-law, nearly every day, and had long conversations with friends. Especially moving were my exchanges with friends who have children or siblings with Down syndrome. All told of the great joys and rewards they had experienced, in spite of (or perhaps even because of) the challenges accompanying Trisomy 21. I sensed that we were being drawn into a family-like fraternity, the bonds of which can only be fully understood by those within it. The stronger these bonds grew, and the more I contemplated the support our family had been getting, the more quickly my sad funk vanished.
And the more my wife and I immersed ourselves in learning about Down syndrome, made connections, and discovered what we could do to optimise our daughter’s development, the less daunting this new world seemed to me. As we studied and discussed and planned, we found ourselves growing closer. Working together, we became increasingly confident about our daughter’s future.
Upon reflection, I realized that I’d traversed the classic Kübler-Ross five stages of grief or loss. In learning that our baby wasn’t the “perfect” one we’d expected, my first reaction had been denial, followed rapidly by anger. I’d tried bargaining for a canonisation-worthy miracle, only to sink into a paralysing depression when it wasn’t forthcoming. Finally, with the help of my wife and of our growing support network, I’d reached acceptance.
But, surprisingly, acceptance turned out not to be the final stage. Along the way, I discovered a sixth: Embracing my daughter’s condition as an integral component of her. Of the amazing child that she is. Of her sweetness. Of the way in which she so attentively observes the world around her. Of her welcoming being held and cuddled by everyone. Of the happy smiles she offers to all who gaze into her eyes. In a flash, I deeply regretted my previous assumptions that a child with Down syndrome couldn’t possibly be a “blessing.” Because there is really no other word for the wondrous little girl whom I love more than life. Our prayers for the perfect baby had been answered, just differently from how we’d originally envisioned.
Most parents, ourselves included, love all their children equally. However, when one of the children experiences a serious difficulty, the parents’ love for that child is often manifested particularly intensely. Nothing is taken away from the family’s other children; the intensity of love simply increases for that child who especially needs it. Our youngest daughter’s diagnosis has been that catalyst of love not only in my wife and me, but in her older siblings as well. The child with particular, ongoing needs has called forth, from the whole family, a particularly intense love and commitment to self-sacrifice on her behalf. She has summoned all hands on deck, and united us around her in a singular purpose.
World Down Syndrome Day will be observed on March 21, or 3/21, because the condition is caused by having three copies of Chromosome 21. The third 21st chromosome is often called an “extra.” We prefer not to use that word, just as we wouldn’t call our daughter an “extra” member of the family. That chromosome is integral to who she is, and inseparable from the joy and love she has brought our family. Snip out every one of her “extra” chromosomes, and how much of the rest of her would we lose? We prefer to think of that chromosome in the same way we think about our daughter herself: as a “bonus.”