Chapter 1, Part 4

Here is the fourth, and final installment, of Chapter 1. You can catch up with the previous installments here. We finish the first 24 hours of meeting Juliet, the outpouring of support we experienced in the hospital, an example from one doctor on how to counsel patients about Down syndrome, and an example from another on how to almost get punched in the face.

As the sun was starting to shine brighter in the mid-morning hours, Dr. Larry Jones, a physician with the pediatric practice we had chosen beforehand, came by as he was finishing rounds. Dr. Jones is of average height, slight build, and wears glasses. He has an almost delicate demeanor to him, having cared for sick children all of his professional career. After introducing himself, he said, “First, let me congratulate you on the birth of your little girl. I understand you’re calling her Juliet. Well, Jules is a healthy little baby. I stopped by and examined her in the nursery just before coming in here. Now, I know you’ve been told that we suspect she has Down syndrome. Let me tell you some of the signs we’ve seen to make us think that.” Dr. Jones went on to list, in addition to her eyes and what he called her “hypotonia,” other physical characteristics commonly shared by those with Down syndrome, not all of which Juliet (or any single individual) has. He continued, “It may take Jules more time to learn some things, but she will learn. She will play. She will go to school. Just remember that she’s first a child and like all children, most importantly, she needs love and caring.” Aside from instantly giving her a nickname that he continues to refer to her by, one which initially sounded grating to my ears but is now endearing, it was the best news anyone with a medical degree had yet told us.

The rest of that first day with Juliet is a blur of visitors, both medical and non-medical. My twin Matt and his wife Shelly came to see their new niece, helpfully picking up and bringing us lunch. My parents’ neighbors who were so close Mama referred to their sons as her “dark-haired children” (my brothers and I are all blondes) and us boys called them Aunt Evelyn and Uncle Ronnie. Nurses would clear the room so they could check on April post-partum and allow Juliet to nurse in peace. My cousins on my mother’s side, Mike and Susan Toadvine came, Susan giving us big hugs and oo-ing and aw-ing over Juliet.

That night, Susan and Alyn Ryan visited. The Ryans were members of our church and of age between my parents’ generation and mine. Their sons, like us, were also raised in the church. While it is typical for church members to visit one another in the hospital, I had never thought that our family and specifically that I had such a close relationship with Susan and Alyn. Sure, on Sundays we would say hello to one another and Alyn and I may talk UK basketball briefly after the service, but nothing more substantive than that—certainly not any deep theological discussions (it is a Presbyterian church after all). I figured the word had gone out from Ken and they were there for fellowship and support. Then, Susan said to me, “you know, our little girl who we lost at childbirth was like your Juliet.” I did not know that they had lost a child, or that that child was a daughter, or that that she had had Down syndrome. That night, we formed a closer connection.

As much as everyone encourages new parents to get rest and to enjoy the help of a nursery staff while at the hospital, anyone who has spent the night in a hospital knows it’s near impossible to get a good night’s sleep absent narcotics or being in an induced coma. Regularly, nurses came in to check April’s vitals. When they weren’t visiting for that reason, it was to bring Juliet to us for her to nurse, which she continued to do successfully throughout her infancy. And, if you’re a guest, not a patient, despite some advances in furniture design, the pull out love seat has a sleep number of 100 with a bar in the middle of your back. We got some sleep, but I wouldn’t say it was restful.

“MR. AND MRS. LEACH.” A booming deep, dry voice rousted us from our sleep at 0800 the following morning. “I’M THE GENETICIST” said the walrus-mustachioed, late-50’s man wearing a white lab coat at the foot of April’s bed. “I’M HERE BECAUSE YOUR DAUGHTER IS BELIEVED TO HAVE DOWN SYNDROME.” This is how we were starting the second day of our daughter’s life. The geneticist went on to explain the genetic basis for Down syndrome, the diagnostic testing that would be done to confirm or disprove their suspicions, and that we would have a follow up appointment at his clinic when the results came in. I thought, “I’m pretty sure a post-it note could’ve substituted equally effectively by just saying ‘follow-up appointment to be scheduled with genetics clinic.’” Then, for reasons that still elude me, while explaining the genetic basis for Down syndrome, this loud, detached man, said, “USUALLY IT’S DUE TO THE MOTHER’S EGGS.” I would later read how Alabama Football Head Coach Gene Stallings, upon being told his son Johnny had Down syndrome, rared back to punch the doctor only to fall from passing out at the shock. Similarly, I have since fantasized that I could have overcome the sleep deprivation and emotional turmoil of that second morning to spring from the sofa bed and flatten that damn geneticist.

In the span of less than 24 hours, we had ridden the rollercoaster of excitement and anticipation expecting our daughter’s birth, to the elation of meeting her face to her beautiful face, to having a nurse shout out that she had Down syndrome, an OB clear the room and speak to us in a tone of sadness about Down syndrome, a pediatrician saying in a sunny way how she was a child first who needed our love, only to end the ride with this guy being an asshole and blaming April for Juliet having it. Who was to be believed? Was this a reason for sadness and despair? Was this one of ours fault? What would “Down syndrome” mean for Juliet?

The first 24 hours of meeting my daughter would launch me on a journey to answer these questions and more with that examination dramatically being refracted through the focus of this book and the realization the journey led me to. It would not take long for others, family, friends, and complete strangers, to ask us, upon learning that Juliet had Down syndrome, “did you know beforehand?” Meaning, had we had prenatal testing? That question and the myriad of issues—ethical, medical, economic—that surround prenatal genetic testing became my vocation.

Since Juliet’s birthday, I became a founder for a national trade association of Down syndrome support organizations; served as President of our local support group; passed a law in my home state and counseled others to pass similar legislation in over a dozen others; met with congressional leaders about healthcare reform; presented at national and international medical conferences; started a blog which receives regular comments from expectant mothers seeking answers; and been invited to the leading bioethics think tank to develop guidance on the ethical administration of the future of prenatal genetic testing. At the same time, I have lived with my daughter (and her little brother, more on him later), and been surprised, saddened, elated, and depressed from seeing all of her experiences and how others have reacted to them. From this work and these experiences, I have gained knowledge and insight into the issues with prenatal genetic testing, the role that Down syndrome plays, and, how these issues will truly affect every one of us.

What follows is my effort to share what I have learned. You should know that I am a lawyer with a masters in bioethics and therefore cannot help but write as though I am making an argument. But, for all the controversial subjects that will be explored-religion, abortion, eugenics to name a few-my goal is simply to hold others to the standards they have adopted for themselves.

The development of my argument and the lay out of this book tracks, as best it can, how an expectant parent experiences prenatal testing, how medical professionals counsel them, and the factors that influence prenatal testing’s administration. For reasons that will be explained later, this is why “Down syndrome” is not the immediate next section or even the one after that. Though perhaps counterintuitive, hopefully it will make sense why it shows up at the point it does in this book. Because, if you look back, I haven’t really told you much of anything actually about Down syndrome. This is because most of us don’t know anything about it, or, more accurately, have a misunderstanding about it. But, what every expectant parent will be offered is prenatal testing for it. And, if the test result comes back positive for Down syndrome, then each of them will be counseled about abortion. Which is why those will be the subjects of the next two chapters.

When we make it to the fourth chapter, that is when the book will actually cover what Down syndrome is and what it has become (and why that locution is accurate). An epiphany will follow of the multitude of support that exists for families and individuals with Down syndrome, before a crass economic survey will be examined, which threatens to jeopardize all of those programs and lives with Down syndrome based on outdated, incomplete, biased studies. Finally, the book will conclude and hopefully you will be convinced about why Down syndrome is a natural, meaningful part of the human condition, but serves as the metaphorical canary in the genetic coal mine and what impact prenatal genetic testing will have on all of us, unless needed reforms are made.

Plus, sprinkled throughout, you’ll learn more about Juliet. I hope you enjoy … and, if I haven’t convinced you with my argument, that you’ll write to tell me why.

This is the end of Chapter One. If you go back to the first installment, you’ll see my reason for posting this serially is to get feedback and encouragement to help me finish the final two remaining chapters. So, I welcome your comments and hope you’ll leave one here or on Facebook where these have been shared.