Ashton Smith, who possesses a mischievous grin and as much positive energy as his tiny frame can contain, started walking in January.
He wasn’t expected to do that. But then, Ashton, who is 5, has a history of blasting the odds makers out of the water. Most of the time, Ashton is beating the odds in a positive way.
However, in his first weeks of life, being one in 1,000 worked against him.
Ashton was a bonus baby. Marion and Alisa Smith had tried to have a child for three years before their first son, Preston, was conceived. Much to their surprise, seven months after Preston was born, Alisa Smith was pregnant with Ashton.
“He was born Dec. 18, 2009,” Alisa Smith said. “He was perfect, a healthy 7 pounds, 9½ ounces.”
What happened a few weeks later is still something of a mystery to Ashton’s parents and to his doctors.
“It was a bad weather year. We didn’t see many people and we don’t know how he got the infection,” Ashton’s mother said. “One night we were all at home, having fun, taking baby pictures, and the next day Ashton came down with RSV” – respiratory syncytial virus.
The thing is, almost all children have an RSV infection by the time they are 2 years old. Almost always, the illness comes and goes with no problem.
“Why RSV is so bad in some children – it is still not understood,” said Dr. Omar Al-Ibrahim, chief of pediatric critical care at Women & Children’s Hospital. “For most kids with RSV, it’s like a cold. They have it for two or three days and it goes away.”
For a small percentage of children, however, RSV can turn much more serious. It can cause inflammation in the lungs or turn into pneumonia, both life-threatening conditions for tiny patients.
Al-Ibrahim said Ashton fell into that small group of children.
“Most of the kids who get RSV who become really sick get it in their first year, especially the first six months of life,” the doctor said.
Ashton was not even 2 months old when his parents noticed he was feverish and appeared to be having trouble breathing. They live in Salamanca and took him to their local medical clinic. An examination showed he had more than a cold and he was rushed to the emergency room at Olean General Hospital, his mother said, but Ashton needed more specialized care than he could get there.
“They decided he needed to get to Buffalo,” Alisa Smith said, “but there was an ice storm and they couldn’t fly him. So a team from Women & Children’s Hospital drove all the way down. They reintubated Ashton and brought him back to the city. We still didn’t know how serious it was. Everyone was so calm. They said he had a virus, that’s all.”
Had she known what was coming, she said, she probably would have gotten into the ambulance with her baby.
Ashton made it to Women & Children’s just fine. The hospital’s neonatal transport team serves critically ill children throughout the eight counties of Western New York, delivering immediate care before they even reach the hospital. The team includes nurse practitioners, respiratory therapists and neonatal physicians. Al-Ibrahim said the hospital transports about 600 to 700 patients each year, and that going to Olean in an ice storm was not unusual.
Most of Ashton’s first day at the hospital went as expected. He was put on a ventilator to help his little lungs and kept under constant watch in the ICU. Then, the unexpected happened.
“(A nurse) was moving a pad under him, and my husband offered to help,” Alisa Smith said, “and all of a sudden Ashton’s SPO2 (oxygen level) dropped from 100 to 0 in a second. She was hollering for help immediately.”
Al-Ibrahim remembers the moment clearly. “Basically, his heart gave up,” is how he puts it.
Ashton’s emergency was perfectly timed.
“It happened around 12:30, when we all were in a meeting,” Al-Ibrahim said. “The nurse called for help and we all heard her, so all the physicians were helping and we got his heart restarted.”
Alisa Smith was surprised by how many people were rushing in to help Ashton. She slipped back out of the way and called her mother, asking her to pray that they were in time.
“They worked on my baby and he turned every color in the rainbow. He crashed twice, and they had to use the paddles, the adult defibs, and he had little burn marks on him,” she said. “Omar (Al-Ibrahim) said to put him on life support if he revived. Some of the others said it was too late, he was gone for too long, that his quality of life would be too bad.
“But thanks to Omar, they got his heart going.”
In no time, Ashton had a machine doing the work of his damaged heart and lungs, which gave them time to rest and recover, Al-Ibrahim said.
Not everyone in the room was hopeful. Alisa Smith said that one of the women there told her she didn’t expect to see the family the next day, adding, “I’m sorry. Your child is very sick.”
Al-Ibrahim was more optimistic, even though Ashton’s case was extreme. He said the hospital puts perhaps 12 children on the heart and lung machine every year, and that it is not uncommon. What was different about Ashton was how swiftly his condition plummeted. There was no warning before his heart stopped; normally, babies go on the machine beforehand, to prevent such crashes.
Ashton remained on life support for six days, with his parents by his side.
After a week, his mother said, he was considered strong enough to try breathing on his own.
“They did a CAT scan, a brain scan, and they said they thought he was ready. We were so afraid,” Alisa Smith said. “He came off the machines one at a time, and then ...”
And then everyone hugged.
“Ashton never went backwards,” Alisa Smith said proudly. “He started breathing on his own from then on.”
Her baby’s fight wasn’t over yet. He suffered significant brain damage when he was without oxygen and he has cerebral palsy. Also, a few months after his first hospitalization, Ashton began to have seizures.
Those are under control and Ashton keeps making progress, his mother said. Her son is verbal, he responds to his parents, he smiles and laughs. He loves playing with his older brother and he likes to watch movies after school.
Last year, Ashton’s treatment took another leap. Although now they can’t even say why they decided to do it, his parents had “banked” the umbilical cord blood cells when Ashton was born. In October, medical researchers at Duke University used 80 percent of them in an experimental treatment for cerebral palsy.
“Ashton took his first steps in January,” his mother said. “He was never supposed to walk.”
Up next, she said, may be more treatment at Duke and they expect he will be walking on his own someday.
Because that’s the kind of kid he is.