The inspiration worked the crowd. “Thank you for coming to my party,” Jillian said. “Nice to meet you. Are you having a good time?” People were attracted to her. People she’d never met. A wonder of Jillian is the joy she inspires in others. Her disability enables.
They came and went on a fine autumn Sunday, when they could have been doing something else. We thanked them all. I wanted to ask them why they came. But I knew. I knew why they came.
Jillian ordered a Sam Adams Light at 1:00 p.m., as soon as we arrived. At 5:00 p.m., she finished it. “I loved my beer, Dad,” she said as we walked from the restaurant. “I loved my day.”
CHAPTER 28
Testing
They’re grieving for the loss of perfect.
—DR. RONALD JAEKLE, DIRECTOR OF
PERINATAL SERVICES, UNIVERSITY
OF CINCINNATI HOSPITAL
Modern science has made it possible to grieve and celebrate all at once. In some corners, science is capable of pounding both sides of the same drum, producing sounds so different, you wouldn’t dream they’d be coming from the same instrument.
Just as Jillian Daugherty and her big family gathered to celebrate her present and future, doctors and researchers were working to make it meaningless. You don’t have to have a child with Down syndrome now. An expectant mother can undergo something called nuchal translucency screening. It’s as easy as a finger prick and a blood draw, and it’s done between the 11th and 14th weeks of pregnancy. Even then, fetal DNA floats freely in the mother’s bloodstream. Technically, the test doesn’t provide a diagnosis of Down syndrome; it tells a woman if she is at increased risk. But the test does identify between 85 and 95 percent of Down syndrome babies, which makes it a rather accurate forecast.
“Prenatal technology,” they call it. Building better babies through medical breakthroughs. Bioengineering is not science fiction. It’s science.
What would you do?
It’s rare now that hospitals suggest that parents of a newborn with Down syndrome give the baby up for adoption. It’s all but unheard of that parents are asked if they intend to keep their child. Instead, the option is entirely preemptive. Don’t have the child at all.
Nuchal translucency screening was not available in 1989; amniocentesis was. Kerry’s could not be performed. We had no decision to make, a non-occurrence for which I still say prayers.
It’s easier than ever to make everything right. Bodies are worked like pieces of clay. Tightened and tucked. Parts are replaced, lines are erased. Parents start preparing their kindergarten kids for college. Heaven help them if they’re not playing Select soccer or Beethoven by the age of ten.
None of us is perfect. Some of us try to be. Others see it as a right.
A forecast of a child with a “chromosomal abnormality” doesn’t meet anyone’s definition of perfect. Today about 90 percent of women who are told they’re likely to have a baby born with Down syndrome will choose to abort. That is the cold, hard calculus in the age of designer children.
Science doesn’t get a free pass, though. It squirms in the presence of moral judgment. Are we making choices that aren’t ours to make? Do we have the right to have a “perfect” child? If we do, define perfection. Is it permissible to wipe out an entire segment of the population? What becomes of those left in that group, when humans like them can be so easily eliminated?
“So many people are focused on the negative aspect,” says Dr. Ronald Jaekle. He is a professor of clinical ob-gyn at the University of Cincinnati Medical School. He’s also the director of perinatal services at University Hospital there. “None of us were guaranteed a perfect life.”
Dr. Jaekle does between 30 and 35 ultrasounds a day. One in 25 will reveal a birth defect. He welcomes the nuchal screening. Not for the life-or-death option it provides, but for the preparedness it offers. Prepared parents are better parents, he says. “Parents with the pre-natal diagnosis are more effective parents for the first two or three years of the child’s life,” he says. “That’s our only goal here.”
Dr. Jaekle disputes the high termination rate. He claims that “less than 5 percent” of his patients choose to terminate the pregnancy. “I get frustrated when someone’s baby has a non-lethal anomaly, and they wonder if they should terminate. It’s not my place to make that decision. I’ll explain the reasons they shouldn’t, but I’m not going to be judgmental.”
At that point, the doctor functions as an unofficial grief counselor.
“That’s their biggest reaction. They think they’re grieving for the loss of the baby. They’re really grieving for the loss of perfect. Women during a pregnancy sculpt their kids’ entire lives. What color dress for senior prom? What about the wedding? It’s a storybook. That’s where the grief comes in. It’s a normal response we want to work through.”
Mothers aren’t the only ones lost in that dream. Before Jillian was born, I imagined cymbidium orchids under a porch light.
Dr. Jaekle doesn’t come to the subject blindly. His 25-year-old daughter Melissa was born 13 weeks premature with cerebral palsy. She weighed 2 pounds, 13 ounces. Five minutes after her birth, Melissa was still receiving chest compressions and had an Apgar score of zero. “You don’t have to do this for us,” Dr. Jaekle told the medical staff keeping his baby girl alive.
Melissa survived. She spent the first year of her life in the hospital. Doctors told the Jaekles their daughter likely wouldn’t walk or talk. Melissa has thrived, thanks to informed and insistent parents. “The biggest challenge has always been making sure everyone else had the same expectations for Melissa that we did,” said Dr. Jaekle.
Armed with that vast continent of empathy, the doctor addresses couples at one of the biggest crossroads of their lives.
“My job is to get them to come to terms with what we have found,” Dr. Jaekle said. “What we traditionally say is, ‘You need to recognize that the overwhelming majority of the kids with Down syndrome are valued and valuable members of their family.’ It’s not a devastating end, just a different direction. I want them to be able to embrace this different future and go forward.”
Tough sell, that.
On the surface, the answer couldn’t be easier. Do you want a child with a disability, or a child without one?
The fear doesn’t end when the child is born, regardless of the preparedness. Media reports are sprinkled with parental misgivings. In a November 2011 story in Time magazine, a woman pregnant with a child with Down syndrome wondered what the child “would do to her marriage and her two older children.”
Another story in Time, in February 2012, featured a new mother who admitted she waited eight hours before she “mustered the nerve” to visit her new baby girl in the neonatal intensive care unit. “I was so afraid of what she was going to look like,” she said.
Even Ron Jaekle said it took him “many years” to come to terms with Melissa’s disability.
It doesn’t help that society can still view people with cognitive disabilities as lesser beings, an image the media sometimes does not discourage. In 2012, political commentator Ann Coulter referred to President Obama as a “retard.” Baltimore Ravens quarterback Joe Flacco used the Super Bowl stage in February 2013 to label “retarded” the notion of playing the game in a cold-weather city.
George Clooney made reference to a “retarded” individual in The Descendants, a movie that was nominated for an Oscar. In a November 2008 edition of the London Sunday Times, respected columnist Minette Marrin had this to say, in a column tangentially about abortion: “What more powerful social reason could there be for an abortion than the virtual certainty that the fetus would be condemned to a life of frustration, disappointment, dependence, serious illness and poverty, to the great sorrow and hardship of its family?”
In her biography on her website, Marrin says she has “a special interest in learning disabilities” because “someone close to me in our family” is learning disabled. This intimate knowledge fortifies her conviction; she’s the a
nti–Ron Jaekle.
“I am convinced that it is a grave misfortune for babies to be born with Down’s or any comparably serious syndrome,” Marrin writes. “It’s a misfortune for their parents and their siblings as well.”
Words color perception. Perception is reality. Imagine dropping the “N-word” so causally these days. We make allowances for the physical disabilities. Those with mental disabilities aren’t as lucky—especially in how they are perceived.
The issue comes with the ultimate irony. Science is operating at cross-purposes when it comes to what to do with people with disabilities. Just as advanced testing threatens/promises to eliminate a whole group of people, other medical advances offer the hope that those people could thrive far beyond current expectations.
In July 2011, a story appeared in the New York Times about the work of Dr. Albert Costa, a physician and neuroscientist. Costa’s daughter, born in 1995, has Down syndrome. Costa experimented on mice with a drug known as memantine, used to treat Alzheimer’s. The results were hopeful. The mice showed improved memory. Costa concluded that they were able to learn as well as standard mice. He suggested that a similar treatment might be effective for people with cognitive disabilities.
Later that year, the Swiss biotech giant Roche announced a clinical trial “to investigate the safety and tolerability of a molecule designed to address the cognitive and behavioral deficits associated with Down syndrome.” Even this research is viewed with an arched brow. Some parents of children with Down fear any improvement in intellect would come with a change in personality. They wonder if the tradeoff would be worth it.
And so it goes. There is no right or wrong answer. There is only personal experience.
Sarah Klein is Jillian’s best friend. Her mother, Catherine, gave birth to Sarah, knowing Sarah would have Down syndrome. Catherine was 38 years old in 1993 so she underwent what at the time were standard tests for birth defects. Hospital staff administered an alpha-fetoprotein test, a blood draw that can detect chromosomal abnormalities in the fetus.
That result came back borderline. That day, Catherine underwent a sonogram, which showed nothing unusual, then an amniocentesis. She and her husband, Walt, were not prepared for what happened next. The phone call came days later, from her obstetrician. Walt was at work in New York City, an hour by train from their Connecticut home. Catherine had Sarah’s older sister Jenny, then 18 months, in her arms when the phone rang. “You’re going to have a baby girl with Down syndrome,” the doctor said, with all the warmth of an audit.
“At that moment, my support group was Jenny,” Catherine recalls.
The Kleins next visited a geneticist, who was equally dispassionate. He greeted them with “a litany of all that could go wrong,” says Walt. “It was like an anvil falling on you.” As Catherine sobbed, the doctor dispatched an intern to find some tissues. “He mentioned institutions,” says Walt. “They still had them in Connecticut.”
The hospital assigned the Kleins a social worker, whom they met with three times. On each occasion, the social worker asked Catherine if she was sure she did not want to terminate the pregnancy. “It’s not too late,” the woman suggested.
“There seemed to be a big assumption within the medical community that I should terminate,” Catherine says. She had suffered three miscarriages in a previous marriage. She never considered not having Sarah.
Walt says the couple never discussed abortion. “We were deeply in love. We mourned, but that passed quickly. We were a great family for this child. We had a great nucleus and a supportive extended family. It quickly felt like the right thing to do.”
What will happen to research designed to help those with Down syndrome? The medical field might be merciful, miraculous even. It is not charitable. If the market shrinks, so will the profit motive. Just as society is grasping the benefits of including its citizens with Down syndrome, science has discovered how to eliminate them. “Weed them out” as the author of the Time story put it.
It’s like taking one too many steps to reach the mountaintop.
Jillian wouldn’t be Jillian without the enhanced and enlightened public support she has received. She would be the victim of “breakthroughs.”
In the New York Times story, Dr. Costa says the emergence of safer and more effective prenatal testing has meant fewer dollars for Down syndrome research: Money from the National Institutes of Health plunged from $23 million in 2003 to $16 million in 2007, before rebounding to $22 million in 2011. In comparison, cystic fibrosis research received $68 million in 2011.
“If we’re not quick enough to offer alternatives, this field might collapse,” Costa said.
Then what?
Experience, no matter how fulfilling, is no match for scientific certainty. Condemning those who choose to abort imperfection isn’t something I’m comfortable doing. I didn’t walk that mile. I’ve walked only mine. It’s been a good walk.
I don’t dwell on Jillian’s shortcomings any more than I do Kelly’s. Neither of them is ever going to design a rocket or cure a disease, and I can live with that. Could I live without them? I’d rather not. They’re good people.
I asked Walt and Catherine Klein what they might say to a couple faced with the choice the Kleins made. Sarah is 21 years old now. She graduated from high school. She’s in her third year at Northern Kentucky University.
“Don’t be scared” is what Catherine would say. “This child will need some extra help. Every child you have needs your help, in different ways. You can’t control how your children will need you.
“A wonderful community has opened up to our entire family. The connections we’ve made are remarkable. Sarah has touched more lives than I will, if I live to 150.”
“Come see our daughter,” says Walt. “I think you’ll be impressed.”
Dr. Ronald Jaekle’s daughter Melissa lives independently in a community for disabled adults outside Houston. “Having Melissa as a daughter has broadened my scope and allowed me to be more empathic in doing my job,” Dr. Jaekle says. “It allows me to talk about the challenges, with heartfelt conviction.”
Jillian Daugherty is thriving in the social mainstream, engaging and engaged, helped by a million hands, seen and unseen. The tapestry of Jillian’s experience could be lost forever in the name of perfection. Which is ironic. Because in some very tangible way, Jillian is closer to perfect than anyone I’ve known.
CHAPTER 29
In Love and Moving Out
I love you so much in my heart and this is amazing
we are dating for seven years. I think I want you forever.
Can I keep you for my love?
—JILLIAN, TO RYAN
On the way home from a date on a night in May 2012, the happy couple sat in the backseat of Kerry’s car and dreamed aloud. The subject was their impending independence. Jillian was 22 years old, and Ryan was 24. They were ready, they decided, for their own place. They had big plans.
“We can go to Reds games,” Jillian suggested, “and plant flowers.”
“We can eat out whenever we want,” said Ryan.
Both agreed that staying up all hours of the night would be a big plus to living together alone. There was also a mutual understanding that a dog would be involved. “I’ll make you pancakes on Saturdays,” Jillian suggested, “after we sleep really late.”
Ryan said, “Ooooh, yeah.”
Kerry and I chuckled. “Living together is a non-stop party,” I said.
“We can’t wait,” Jillian said.
Ryan, somewhat more practical, asked, “What do you mean?”
Later that night, Jillian, Kerry and I gathered on the deck. Although Jillian enjoyed talking about leaving, and the promise of unlimited late nights and pancake breakfasts, she also had her reservations. “I’m just a little bit nervous, a little bit,” she said.
“I know, Jills.”
“It’s going to be hard to say goodbye to you guys.”
We assured her that any apartment they chose
would be very close to us. We also reminded her that we didn’t see her much now anyway, with her spending all day at school, managing the basketball team and the still-obligatory Jillian Daugherty Show time, in the basement or her room.
“It’s true you won’t be right down the hall anymore,” I said. “You won’t be able to tell us goodnight or give Lucy a hug.” Lucy is our eight-year-old golden retriever. I wasn’t trying to make Jillian feel awful, even though that’s what I did. I wanted her to know that getting a place of her own wasn’t all ball-games and flower boxes. “This would be a lot of hard work for you and Ryan,” I said.
Jillian sniffled and pondered that for a moment. “No matter what, we stick together because we love each other,” she said.
“I know you and Ryan love each other. You just need to understand that it’s a lot more responsibility. You have to cook and clean. You have to get yourself up and on the bus in the morning. You have to shop for food and do laundry.”
“I don’t mind,” Jillian said. And in truth, she didn’t. She’d been talking about moving out for months. In Jillian’s mind, the transition from “I wide bike” to “I’m ready for my own place” was small and seamless. When she determines she wants to do something, there is no dissuading her.
Kerry and I had been thinking the same. It was the next logical step. It was the biggest step of all. We’d been working toward it for only the past 21-plus years. A few months after her 21st birthday, Jillian started banging the drum.
“I think your little girl is ready to move out,” she announced.
“Is that right, big-time? What makes you think that?” I asked.
“I can count money.”
Really?
“Yep. And I can make dinner.”
It was true about dinner. Kerry had started giving her recipes to follow. As Jillian proceeded through the steps, Kerry took pictures: The ingredients, aligned on the kitchen counter and then being prepared for cooking. What the finished product looked like. Kerry put the pictures and the recipes in a three-ring binder.
An Uncomplicated Life Page 26