When the Hanley family and other people around St. Clair refer to now 11-year-old Dexter Hanley as a “miracle child,” they aren’t exaggerating. They truly believe his life is deserving of the word.
The family had been told more than once over the last 11 years that there was nothing doctors could do to save him. One specialist the family saw in Omaha, Neb., even went so far as to offer the family advice on how to get Dexter’s body home after he passed away.
Yet just when Dexter’s condition was at its worst, “he suddenly got better for no reason,” his mom, Shelene Hanley, said smiling.
Being a family of faith, they attribute Dexter’s recovery to God.
“That’s why we call him our ‘miracle child,’ ” said Shelene Hanley.
“He had a lot of prayers being said for him,” Todd Hanley, Dexter’s father, said, shaking his head. “That definitely strengthened our belief too.”
Small Intestine Removed
Born 12 weeks premature along with his identical twin brother, Logan, Dexter developed major intestinal complications when he was just 6 weeks old.
The official name for it is necrotizing enterocolitis which means “death of tissue.” It’s an acquired gastro-intestinal illness that affects children with low birth weights, Shelene Hanley explained.
Being premature and a twin, Dexter was born weighing just 2 pounds, 15 ounces.
“It wiped out his intestines,” she told The Missourian back in 2005 when the newspaper ran a story on Dexter having a wish granted through the Make-A-Wish Foundation.
“He had to have all but 13 centimeters of his small intestine removed,” she told The Missourian earlier this week.
“They took out half of it first, expecting he would get better, but within 12 hours, he had gotten so bad that they went in to get the rest of it.”
The doctor at then-St. John’s Mercy Medical Center who removed Dexter’s small intestine had never heard of a small intestine transplant, but referred the Hanleys to Cardinal Glennon Children’s Hospital to learn of Dexter’s options.
There are only three places in the country that perform bowel transplants. The Hanleys said they chose the hospital in Omaha, Neb., because it had the best success rate.
But like with all organ transplants, there is a matching process involved. With the small intestine, it’s about size and fit.
“It has to be a perfect fit,” Shelene Hanley said of the donated organ, which the family has learned came from another child around 1 year old.
Dexter had to wait about five months before a small intestine his size was donated. He was 15 months old.
The family rushed to Omaha, flying out of Spirit of St. Louis Airport on a plane equipped to handle Dexter’s fragile condition. When they arrived in Omaha, Dexter’s parents and twin brother were able to stay at the Ronald McDonald House, which was an enormous support for the family.
With all of the medical bills and then time away from work so both of Dexter’s parents could be with him in Omaha, money was a major concern.
“The only income we had was Social Security, and it was just enough to get by,” recalled Shelene Hanley. “The entire community (of St. Clair) supported us too with yard sales and things, and our church took up a collection.”
Still, the money went fast. The plane ride to Omaha alone cost $3,700, Todd Hanley noted.
“The Ronald McDonald House is the only reason we survived up there,” he said, with a look of sincere gratitude on his face.
Not only was it helpful financially not to have the expense of staying in a hotel, but it was incredibly supportive to be around other families experiencing similar struggles with their children, like an instant support group, the Hanleys said.
“When the kids went to sleep, we all turned on our baby monitors and the parents sat around talking,” said Shelene Hanley.
“We made some really lasting friendships,” added Todd Hanley.
Dexter received his small intestine transplant on Feb. 12, 2003, which has since been known in the Hanley family as “Dexter Day.”
But the transplant didn’t end all of his suffering. He had a number of setbacks, including 11 more surgeries and a heart problem that was so severe as a result of fluid buildup around his heart that doctors told the family he needed a heart transplant.
“That’s when they told us he had no chance,” recalled Shelene Hanley.
Dexter proved them all wrong.
The family came home in April 2004 and haven’t been back to the hospital for anything serious since. He had one more surgery right before his 5th birthday to reconnect his intestine to his colon.
He’d had an ostomy bag for elimination.
Doctors wanted to make sure he was stronger and doing well before they did more surgery, explained Todd Hanley.
To ensure Dexter’s body won’t reject the small intestine transplant, he has to be on immunosuppressive medication for the rest of his life. For that same reason, however, the Hanleys were told years ago to expect Dexter to be a sickly child, in the hospital as much as five and six times a year from routine viruses and illnesses.
The flu, doctors told them, could be devastating for Dexter. But again, he’s proven them all wrong.
“Dexter hasn’t been in the hospital once in over five years,” said Todd Hanley, smiling.
Doctors monitor him closely though. Every three months, Dexter sees a gastrointestinal specialist and once a month he has blood work done to measure the immunosuppressive medications he takes.
Two years ago when doctors removed a “feeding button” that Dexter had had surgically inserted so he could receive food through a feeding tube, it was the first time he had been “wire and device” free his whole life, said Shelene Hanley.
Right now the family is focused on helping Dexter gain weight, which could be complicated even more by puberty.
“Food has a hard time being absorbed, so we have to work on that,” explained Shelene Hanley.
At some point the family will go back to Omaha to meet with a nutritionist.
Ready to Give Back
Next Tuesday, Feb. 12, will mark 10 years since Dexter had his transplant — 10 years since “Dexter Day.”
Looking back on how far they’ve come and knowing they are only where they are today because of the help and support of so many others, the Hanleys want to celebrate and give back.
So this year in honor of “Dexter Day” they are holding a benefit for the Ronald McDonald House Charity.
It will be this Saturday, Feb. 9, from noon to 4 p.m. at the St. Clair Elks Hall.
The event started out as a private party for the family to celebrate, but as more and more people said they wanted to participate, the Hanleys decided to do more.
The St. Clair Elks Hall agreed to donate its facility, and the family began planning activities, games and collecting raffle prizes from area businesses.
“We wanted it to be something fun for Dexter,” said Shelene Hanley.
Dexter is excited too. He’s planning an area for games and told his parents he’d like to give out candy.
There also will be a mini cook-off, cake walk, bake sales and a box set out where people can make donations to the Ronald McDonald House Charity.
“We feel so fortunate, we’d like to support another family who needs it,” said Todd Hanley. “Anything we can do . . . ”
They set their goal at $1,000 but are hopeful as much as $1,500 can be raised.
Dexter is a fifth-grade student at Edgar Murray Elementary in St. Clair. His grandparents are Keith and Cynthia McCowen, Bill Hanley, all of St. Clair, and Geniene Chitwood, Sullivan.