JONESBORO, AR (KAIT) - How do you measure progress?
For one Region 8 family, it’s leaving no stone unturned when it comes to finding options for their three-year-old son with cerebral palsy.
Life doesn’t come with guarantees, but the Dooley family is trying their best to insure that their Quentin has every opportunity to succeed.
“Dance, Quentin,” a voice belonging to Quentin’s sister begs him at TLC, The Learning Center on Fox Meadow Lane in Jonesboro. TLC is a preschool program serving children with developmental delays.
Three-year-old Quentin stands in the middle of the room smiling and bobbing up and down, clapping his hands with joy.
“Yay, Quentin!” Beth Lovins, Quentin’s physical therapist said. “I just love that you love this song!”
His smile, and laughter, light up the room.
Quentin’s smile belies the fact that he has been through a lot. Right from day one.
“I was 37 weeks and two days when we went for our 37 week check-up,” Erin Dooley, Quentin’s mother, said of her pregnancy.
Both Erin, and husband, Wynne attorney Carter Dooley, were excited.
The parents of two other children, Addyson and Brayden, they knew what to expect. Everything was going according to plan for this pregnancy.
“You’re on Cloud Nine," Carter Dooley remembers. “I had put my phone on to record the moment.”
Delivery day was nearly here! But an ultrasound revealed...
“The brain had an abnormal amount of fluid,” Erin recalled the news from her OB-GYN's office.
In one hour’s time, everything changed.
Her physician could not hold back the emotion.
“She had tears in her eyes and she hugged me and said, ‘I’m so sorry.’ And I thought, ‘Oh my goodness!’ I don’t know what to think when the doctor tells you, ‘I’m so sorry,’” Erin said.
“That was very, very hard,” Carter recalled. “It went from that moment, until you need to get over to a facility or a colleague who had the more advanced equipment or technology. So it went from 9:05 to 10 o’clock and it was like all of these things were going on.”
The Dooleys were sent straight to a more advanced imaging center in Memphis where the news went from bad to worse.
“Then he also said, ‘I see something else. I see a heart defect,’” Erin said of the next doctor’s analysis.
The news almost more than they could bear.
“He said, ‘I think it’s a ventricular hypertrophy and I think it’s on the right side,’” Erin remembered.
What should have been one of the happiest days of their lives...
“This is all in one day,” Erin said.
Grew darker by the minute. The anxiety too much.
“I told Carter while we were waiting in the conference room and I said, ‘I think, I’m in labor,’” Erin said.
Contractions did stop.
“He was delivered and had a really weak cry,” Erin remembered.
“He was huge!,” Erin said.
Quentin weighed 8 pounds, 9 ounces and was delivered by emergency C-section hours later.
“I remember specifically at midnight, I was seeing him being strapped down by the flight team and that was extremely hard,” Carter recalled.
“They said that you can stick your hand in (to the isolette) and touch him,” Erin said. “But, we’ve got to take him.”
Quentin had a severe hemorrhage in his brain.
“Through MRI, they discovered he had had a Grade 4 bleed on his left side, which is the worst bleed and he was shunted with a VP shunt at seven days old at LeBonheur,” Erin said.
The shunt will have to be modified as he grows, and Quentin has certainly done a lot of that.
From a baby to a sibling that is adored.
“He’s changed our lives for the better,” Erin said.
And it’s possible Quentin’s life has forever been changed by his brother, Brayden.
“He was part of a clinical trial at Duke University,” Erin explained.
Erin searched the internet looking for something—anything that might Quentin with his CP diagnosis. Then she saw it. Cord blood. A study to if umbilical cord blood banked from her other two children could help Quentin.
“He was infused with 80 percent of Brayden’s cord blood,” Erin explained. “Like 24-36 hours, he seemed more alert. I’ll still remember his neurosurgeon coming in and saying ya’ll take a look at this!”
Brain tissue plumped up, or improved.
“High five!” Lovins tells Quentin. “Good job!
Today, Quentin is making great strides at TLC in Jonesboro.
“We had special funding from UCP that helped to send me and several other therapists to a special training specifically for children with neuromuscular disorders like cerebral palsy,” Lovins explained. “So that we can assess and treat more efficiently. We just get better functional outcomes.”
“You going to your class?” Erin asked Quentin.
Erin quit her job as a teacher to drive Quentin back and forth from Wynne to Jonesboro every school day. It’s 96 miles a day round trip.
“Diana, on his back, he has an incision,” Carter explained.
Quentin’s father researched an innovative new surgery. Selective dorsal rhizotomy, or SDR, relieves spasticity... or stiff muscles that make movement difficult.
“This doctor has people come from Russia and Japan, the West Coast—everywhere to him because he is actually the one who created the surgery,” Carter explained. “I saw a surgery that he performed at that hospital. They would actually get two medical instruments together that had a 90 degree angle on it. One was black and one was red. I presumed to be positive and negative. And they would pick up the nerves. They would grade them on a scale from one to five. They would say, ‘good’ or ‘bad.’ They’d pick up another nerve and they would be like ‘dead’ and you had someone clip it. Gone! And they would move on to another nerve. When it is all said and done you are instantaneously removing spasticity.”
Quentin was the youngest to have the surgery.
“He does love music. He loves light,” Erin said with a smile.
“I have never put my head down at night and thought you know, we didn’t do enough,” Carter said.
As a father, he too has labored over medical decisions regarding Quentin’s future. Those decisions appear to be paying off.
"Go Quentin! Go Quentin!” his brothers and sisters chant and he claps his hands, smiling with a broad grin.
Quentin turns four years old in March.
His mother is now pursuing certification in Special Education, all because of Quentin.