A Physician's Perspective

Whatever I thought I knew about Trisomy 21 was wrong, plain and simple. And surprisingly, most of the doctors and most of our family weren't much help either when it came to sorting through the big issues. Would she be able to talk? Would she be able to live independently? Would she be able to work? And what about driving? And our son? Wouldn't she be a burden on him? On us?

The questions had a searing urgency to them after the amniocentesis. We had a decision to make, my wife and I, which in retrospect seems about as silly as chicken on pancakes with whipped cream for Sunday brunch. But we had to work through the diagnosis, and look past it, beyond our biases, professional opinions, and fears, to the most fundamental questions that every parent asks themselves at one point or another. What do we want for our children?

Unlike my wife, I walked into our deliberations with a disadvantage, and you should note that I've taken license to include my wife under this umbrella. The fact is that there never was a decision to be made for her. The child inside her was just that - a child, and she was committed to all the things that a loving parent does for her child, no matter what. I, on the other hand, walked into this process as a medical professional that was surrounded by other medical professionals, all of which, with the exception of three colleagues, reiterated the expectation that we had a decision to make. For some, the decision was self-evident, and they told me so. Their bias rang through loud and clear.

As a medical student and then a surgical intern, I had worked with more than my share of children with Trisomy 21. An early interest in Pediatric Cardiology broadened my exposure beyond the typical medical school experience and informed the fears I would now have to face. Many of these babies were floppy, with low muscle tone and little initiative. Many had congenital heart defects, and gastrointestinal defects, and hearing issues, and I trust you get the point, the list goes on and on and on and on. And now one of them lived in my wife's belly.

We made an informed decision after a few tests and a slew of discussions fourteen days later to carry the pregnancy to term, but we were fortunate. The perinatologist didn't really see much on examination of the baby by ultrasound. There were no holes in the heart. The bowel was where it was supposed to be. We could see two arms and two legs. Had there been any significant issues, my confidence moving forward would have been dealt a serious blow, but there were none, not that anything would have changed.

Of course, none of this morphological testing answered the question that was foremost in my mind, but it was a convenient crutch at the time. How significant would the mental impairment be? Would she be able to cook for herself? Should I expect her to read? Or write? How cruel could the world be to someone like her?

As we began to speak to the families of children with Trisomy 21 -- parents and grandparents, siblings and cousins – it became glaringly obvious that I would have to relearn what I thought I knew, and shed the expectations that I had for myself, and the child that was soon to be born. Slowly, and with the help of the community of families that have shared in this journey, my wife and I began to educate ourselves and those closest to us of the joys and challenges that we would bear in the years to come.

There should be no doubt in anyone’s mind that these challenges we and our daughter have faced are different and potentially more pressing than those without this type of blessing. And they are more regardless of what my wife may say. But in the end, they are really no different than the many challenges that every mother and father faces if they have chosen to be a parent to their child. The milestones, when they come, come a little slower, but they do come, and with them the questions change too. Is the house childproofed? Should she really be going down the slide that way? Is she really going to want to date? Kids like her really are driving? And going to college? Married?

Life with our Little Lady, that’s what I call her, has never been better. She’s almost walking, and she’s almost talking. She uses a fork rarely and just loves her lentils and pizza a la fingers and dirt. The piano is a marvel to her, and her older brother, our Little Man, is her god, standing at only 3 feet and change. When she smiles, the room lights up and your heart melts. And when she cries, we pick up the pieces and make it all better. The point is that our days with our Little Lady are about the things that make life worth living, plus a little extra to get things going.

Do I still have fears moving forward? Of course I do, but that shouldn’t be a surprise. Every parent does whatever their child’s special gifts may be. But will my Little Lady be happy? Yes. Will she contribute to her community? Probably. Will she make a difference? Undoubtedly. Would I do this all over again? Absolutely.

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