Eric C. Last
Annals of Internal Medicine Jan. 15, 1996; 124 (2):271-2
(Reprinted as I have learned in You Will Dream New Dreams.)
Reprinted with the permission of ACP-ASIM.|
This article is copyrighted material and should not be republished or reproduced without the expressed permission of the American College of Physicians/American Society of Internal Medicine (ACP-ASIM)
The birth of our third child was supposed to be a scheduled cesarean section, performed at the hospital where I practice. However, several days before the appointed date, my wife began labor, and her scheduled section turned into an urgent one. Not long after the procedure began, our new baby, our Corrie, was handed to me with the pediatrician's pronouncement, "Here's your perfect baby girl." As I had done twice before, I cradled this new life in my hands as tears of joy and thankfulness welled in my eyes. Too quickly, the circulating nurse took our new angel from me to be officially weighed and measured.
Not more than five minutes later, I felt a hand, gentle yet insistent, on my left shoulder. One of the nurses was there, whispering to me that the pediatrician needed to speak to me. I thought to myself that he was simply being a polite colleague, wanting to wish us luck. Nothing could be wrong, I reasoned, because he had used the words "perfect baby girl." But the look on his face when I saw him waiting in the hallway told me that something had changed.
"I can't be sure," he began haltingly, "but I'm concerned that Corrie may have Down syndrome." He described "some things" that had him concerned, like very low muscle tone and a bothersome transverse crease on her palm. He told me about the tests that would be needed, the specialists who would be called.
I shook his hand and thanked him for his thoroughness. I then felt a real physical pain, the likes of which I had never experienced in my life. It began in my gut, went up through my chest, and terminated in a wave of nausea and tremulousness that seized my entire being. I was helped to a chair and given a cup of water while I waited for the obstetrician to complete his work.
Fifteen minutes later, the obstetrician emerged from the OR (operating room), looking drawn and shocked. Someone had told him of the events of the preceding minutes, and he immediately came to me and embraced me. Tears again welled up in my eyes, though now they were tears of grief and fear. Once composed, I asked how we were going to tell my wife. "That," he began slowly, "is something you are going to have to do." I tried in vain to get someone else, anyone else, to give her this piece of news, but all agreed it was best handled by me.
I walked slowly toward the recovery room, the obstetrician's arm around my flagging shoulders. I recalled the many times I had given bad news to patientsnews of cancer diagnosed, cancer recurred, AIDS, respiratory failure, any of the awful events that cause the body to fail. I wished I could be back in any of those situations and not have to complete this task. I took a deep breath, entered the room, and held my wife's hand.
"There might be a problem," I said clumsily. "The pediatrician thinks Corrie might have Down syndrome." My wife squeezed my hand, grimaced, and turned her head away. Within minutes she was asleep again, momentarily escaping our new nightmare.
After spending a few moments in the delivery room lounge trying to summon some strength, I somehow made my way downstairs to the doctors' lounge I had been in so many times before. I stared at the familiar phones, knowing I needed to pick one up and start dialing all the loved ones waiting anxiously to hear our good news. But the news I gave wouldn't be good. The hardest call was to our two older kids, telling themwith voice disguised as best I couldabout their new sister, who was waiting to see them. I managed to complete the call, hung up the phone, and broke down once again.
I returned to the nursery, where a pediatric geneticist was present, clipboard-toting assistant at his side, to catalog all of Corrie's parts. He rattled off a list of anomalies indicative of the presence of an extra chromosome. Yet for each one, my brain jumped (ecstatically!) to another family member who had a similar trait. And with each, I became convinced that this was all an overreaction, doctors once again looking for things that weren't really there. But there was also a small voice in the back of my head. I knew that I didn't want to believe that something so awful, so strange, could be wrong with our child. Yet I was starting to believe that they could be right.
The remainder of the first two days of Corrie's life were filled with new anxieties. There was difficulty obtaining blood for chromosome studies. Then there was the possibility of a cardiac problem, heralded by cyanosis whenever she cried. There were moments of solace, of comforting words and positive thoughts from colleagues, perspective-building words from the social worker.
But there was also a fellow physician who sank beneath insensitivity, gloatingly telling me how his wife had an amniocentesis with each pregnancy. "Don't you know you could have terminated if she'd had an amnio?" he asked.
Don't you realize, I thought, you are talking about my very real, very alive baby?
Each day I wandered the hallways of the hospital living each of Elisabeth Kübler-Ross's stages. Bargaining was the most interesting. I saw the pediatric ICU (intensive care unit) ambulance arrive from our affiliated teaching hospital and thought how much nicer it would be if Corrie had an acute, life-threatening problem, where her future would hinge on some miracle of diagnostic acumen or surgical prowess, where the odds might be heavily stacked against her, but where her life would be forever normal if the procedure were a success. Instead, we had the possibility of a future filled with unknowns, and that unknown void would stretch out for the rest of Corrie's life, and ours.
Beyond the shock and fear, the overriding feeling during that first week was that something very special had been stolen from us. There were little things that should have happened, but couldn't. The expectations of all the happy visits and handshakes in the hospital now turned into looks of sadness, expressions of condolence. There were the walks to the nursery, gazing at all of the newborns and staring at Corrie, trying to convince myself that she looked no different from the others. There was the traditional "surf and turf" dinner for new parents the night before discharge, when my wife and I went through the motions of enjoying ourselves, unable to hide our anxieties or sadness from each other.
One week after Corrie's birth, the geneticist called to say that the results were in and, yes, there were three number-21 chromosomes. But the real impact of that news didn't really hit until I saw the actual karyotype, with perfectly symmetrical rows of chromosome pairs except above the number 21, where an extra piece of genetic material lay waiting to change our family's life forever.
It is now a year since Corrie's birth, and our lives truly have been changedchanged in ways I could not have imagined twelve months ago. No longer do I think of words like "horror" and "fear" when I describe our situation or Corrie's life. I think of the beautiful images I have seen: the joyful expression on my wife's face that has replaced her dread, the sheer delight our older children get when Corrie responds to their play, the look Corrie gets when her daddy holds her (a look I'm convinced she reserves for me), and the incredible joy we all feel as she attains each milestone. I think of the progress she has made and of the staff of teachers and therapists who have cared for her, people who have, for me, defined the word "dedication."
And, yes, Corrie has changed the way I live, and so has changed the way I practice medicine. I have a new sense of appreciation for my truly ill patients and maybe a little less patience for those with trivial complaints. I have seen unbelievable coincidences in my practice, such as the friendship of a man I have cared for over the past six years whose family has adopted a series of children with Down syndrome, or the grandmother who came into my office bursting with pride two years before Corrie's birth telling me of her grandson's Bar Mitzvahher grandson with Down syndrome. I have drawn strength from so many, including one person who was dying, who knew of our situation and who cared enough to ask.
But mostly I think I have learned about myself, and about love. And while we don't know what the future will hold for Corrie, I realize we can't predict this for anyone, even for ourselves. I realize that I have made certain foolish assumptions in my life. I took it as a given that my children would all go to school, would all attain some stature in the world that I used to know and took for granted. But that world is very different to me now, and I realize just how arrogant such assumptions really are. And because of that, I have learned to try to appreciate all that surrounds me, as often as I can, for there is truly so much to be amazed by and to be thankful for.
Eric is the father of three children, Farryl (1988), Harrison (1990), and Corrie (1994). He and his wife, Lauri, met while attending medical school. They live on Long Island, New York, in the town of North Bellmore. Eric is an internist in private practice in Wantagh, New York. His interests include medical education, medical ethics, and increasing the sensitivity of health care professionals to the needs of families of children with disabilities. He counts Farryl, Harrison, and Corrie among his personal heroes for their strength, love, and determination.
Revised: September 23, 2001.