(skip this header)

Westport News

Tuesday, October 21, 2014

westport-news.com Businesses

« Back to Article

New Texans coach faces challenge of son's debilitating condition

Dale Robertso, Houston Chronicle
Published 2:42 pm, Thursday, January 23, 2014

nextprevious

  • Colleen O'Brien, wife of new Texans coach Bill O'Brien, spends time with their sons Jack, 11, left, and Michael, 8. Jack suffers from lissencephaly, a genetic condition that results in developmental damage. Photo: JOE HERMITT, STAFF PHOTOGRAPHER / THE PATRIOT-NEWS
    Colleen O'Brien, wife of new Texans coach Bill O'Brien, spends time with their sons Jack, 11, left, and Michael, 8. Jack suffers from lissencephaly, a genetic condition that results in developmental damage. Photo: JOE HERMITT, STAFF PHOTOGRAPHER

 

Larger | Smaller
Email This
Font
Page 1 of 1

Bill O'Brien has never confronted a coaching challenge as great as what his son Jack copes with every waking minute of his young life. While remaking a Texans team that lost its final 14 games in 2013 may seem like a daunting task for the new 44-year-old head coach, it's not lissencephaly.

The tongue-twisting word means "smooth brain." That's the literal translation because the folds in grooves in the brain never fully develop in those who are born with it. The cause is a genetic mistake, a defective neuronal migration, during the fetus' early months in the womb, and the resulting developmental damage is all-encompassing as well as irreversible.

"It's tragic," said Dr. Gary Clark, who is Texas Children's Hospital's chief of pediatric neurology and developmental neuroscience. "There's no other way to describe it."

Lissencephaly causes frequent seizures, requiring often massive doses of sedating medication. Although medical advances have improved the overall health of patients, Jack needs virtually around-the-clock, hands-on care. He can't walk or speak coherently or see very well, and that's never going to change. At 11, he long has exceeded the normal life expectancy for a child with the terrible affliction, which often leads to lung failure because its nonambulatory victims can't develop strong pulmonary systems.

It strikes one in every 100,000 newborns, the consummate random bad break for both parents and their babies. Although an ultrasound during pregnancy can now detect lissencephaly, giving the parents the termination option, most wouldn't know to be on guard for it because it's so rare and it is not an inherited condition. Bill O'Brien - who was introduced as the Texans new head coach on Jan. 3 - and his wife, Colleen, also have a perfectly normal 8-year-old named Michael. But, as first-time parents with Jack, the O'Briens didn't sense there was a serious problem until he approached his first birthday showing physical and cognitive signs that he was lagging developmentally.

When confronted with the awful truth, however, they made the decision to celebrate Jack for who he is rather than lament who he'll never be.

"In a way, this was one of the best things that ever happened to us," O'Brien said in an interview with the New York Times in 2012. "It added so much perspective to our lives. We figured out what was important. It brought us closer together and put in perspective the importance of football."

Texas Children's Hospital in the Medical Center has been at the forefront of lissencephaly research since 1982 when William Dobyns, then a neurology fellow at Baylor College of Medicine/Texas Children's, became the first to discover that a missing 17th chromosome was at the root of the condition. Dobyns' colleague, David Ledbetter, subsequently ferreted out the cause and, three-plus decades later, Clark ranks among the world's foremost authorities on lissencephaly. He's proud of the fact that hospitals around the country routinely "refer patients to us because we have more tools in the shed for treating it."

The O'Briens, not surprisingly, had done their homework. Landing his dream coaching job in exactly the right place for Jack was a stroke of very good fortune.

"There's a fantastic children's hospital here that my wife and I have already researched," the new coach said at his introductory press conference. "It's one of the best in the world. So we're looking forward to meeting the people there."

Clark conceded it's "very hard" to find adequate care for kids with lissencephaly even in a city with Houston's giant medical infrastructure because of how "intimidating" the myriad problems are. O'Brien's wife, Colleen, gave up her career as an attorney because Jack's needs are so great, admitting in previous interviews that she'd come up with no acceptable options. But the Chronicle's story on her son's condition generated a number of responses from people whose children are dealing with severe developmental issues, and the O'Briens should have no problem building a strong community support network once they get settled in Houston.