What is the experience of parents who learn they are having a child with Down syndrome, a genetic disorder that causes intellectual disabilities and often physical problems as well?
“My main concern was what people would think about me — what weakness inside me caused that.”
These painfully honest words are those of Heath White, a pilot-turned-FBI agent, whose second daughter, Paisley, was born marked by signs of the disability caused by an extra full copy or partial copy of chromosome 21. “Learning you're having a child with Downs is like experiencing a death, that's what I felt like,” he stated in a video interview taped last year with ESPN.
Yet now, five years later, White feels pretty much the opposite of catastrophic gloom. Paisley is “the light in the darkness” and a very personal inspiration, who continues to motivate him in countless ways. In fact, he told his story to ESPN in order to help other parents who may feel conflicted upon learning that their child will be born with Down syndrome.
Features of Down syndrome
Down syndrome, which alters the course of development in a growing fetus, cannot be cured. The physical characteristics that signal the disorder include an upward slant to the eyes, small stature, low muscle tone, and a single deep crease across the center of the palm. Each person with Down syndrome may possess these traits to different degrees or not at all. Each is unique.
There are more than 400,000 people living with Down syndrome in the U.S., where one in every 691 babies born has the genetic disorder. In fact, it is the most commonly occurring chromosomal condition, according to the National Down Syndrome Society.
It is commonly known that the age of the mother is a risk factor for Down syndrome. By age 35, a woman's risk of conceiving a child with Down syndrome is one in 400; by age 45, her risk escalates to one in 35. However, 80 percent of children with Down syndrome are born to women under 35 because younger women have more babies by far.
In roughly 98 percent of cases, Down syndrome appears to be a random occurrence and not hereditary. For instance, translocation Down syndrome is one form of the disorder, which can either be passed from parent to child or occur spontaneously; yet, only about four percent of all children born with Down syndrome are instances of translocation, and of these, only about half are cases of inherited translocation. Additionally, scientists have not identified any behavioral or environmental factors that increase the risk of Down syndrome.
Individuals with Down syndrome have been shown to have an increased risk for congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, thyroid conditions, and certain other medical conditions. Because many of these conditions are treatable or manageable, individuals with Down syndrome are now leading healthier and longer lives. In fact, life expectancy for people with Down syndrome has increased from just 25 years in 1983 to a full 60 years today.
Heath White’s Story
Throughout his life, White had pursued excellence and found strength in an image of perfection — he played team sports during college, achieved a 4.0 grade average, and enrolled in law school before training to become a pilot. Then in 2007, he learned that his wife, Jennifer, was carrying a baby with Down syndrome. This unknown and unborn child, the Texas father believed, would ruin his ‘perfect’ family, and he wished that Jennifer would have an abortion, he told ESPN.
Obviously, Jennifer refused. Unmoved by his newborn and imperfect daughter, he was simply going through the motions of fatherhood until the moment she laughed when he tickled her and his chill heart suddenly warmed.
“Nobody knew the way I felt before she was born, and if I can keep one family, one person from having to live with the guilt and almost making the mistake that I almost made, it's going to be worth the pain that Paisley will feel later in life knowing the way that I felt,” he told ESPN.
As his daughter approached 1.5 years old, White began writing a letter, detailing his conflicted feelings about her birth and how he changed into a father who loves her beyond words; he told ESPN that he knows the letter could upset her in the future but he wishes for the opposite. “It was just my way of repenting,” he said to ESPN. “Chances are that she never would have known the way I felt before she was born. That could have been my dirty secret that I kept with me forever. But I didn't want it to be a secret, I wanted her to know that she was everything to me.”
He also dreams that other worried parents will learn from his experience and find unexpected love for a child born with Down syndrome.
“Initially Heath had said, ‘I don't want to take care of somebody for the rest of my life,’” Jennifer told ESPN. “I think now he looks at it and says, ‘Oh my goodness, I may not get to take care of her the rest of her life.’”