By Jonathan Gault
Sam Ponto should have been working that day. But he’d hurt his hand a few days earlier, which had kept him at home in Baldwinsville instead of going in to work his job as a mechanic for Centro in Syracuse.
So Sam was the one tasked with putting his three-year-old son, Joey, down for a nap on that August day several years ago. A nap seemed pretty appealing to Sam too; he nodded off in his own bedroom next door to Joey’s.
And then it happened.
Sam woke up when he heard Joey breathing louder than usual. He went in to check on his son and found vomit on the floor.
“Joe, can you hear me?” Sam asked desperately.
“Yeah,” Joey replied.
But the boy’s eyes were fluttering and he was looking past his father, off into the distance. Sam’s wife, Cathy, arrived home a few minutes later and dialed 911.
“By the time he got in the ambulance, he was not responding at all,” Cathy Ponto said. “When we got to the hospital, they said, ‘Oh no, it’s a full-blown seizure.’ And it took over an hour before they got it to stop. That was horrific.”
Joey’s seizure was just another reminder that everything changes when you give birth to a premature child.
Joey is nine now, but he still feels the effects of being born 12 weeks premature. He had heart surgery at just three days old. Shortly afterwards, Joey was diagnosed with hydrocephalus after hemorrhaging in his brain clotted and prevented the surrounding water from draining properly. He had to have a shunt inserted to drain the fluid and will require one for the rest of his life.
The Pontos hope that most of Joey’s medical problems are over for now. He spent much of the summer of 2011 in the hospital because of a cyst on the fourth ventricle in his brain, but he’s been healthy for the past few years, with no significant time in the hospital.
Still, Joey has to deal with lingering problems associated with his prematurity. He takes three different kinds of seizure medication, asthma medication and medication for ADD. He has cerebral palsy and struggles to move the right side of his body. And cognitively, he’s behind where children his age would typically be.
That gap will likely continue to grow, since it takes Joey a long time to master new concepts.
“Sometimes a kid might need to be exposed to a concept 25 times before they get it,” Cathy Ponto, who works as a nurse, said. “A kid like Joey might need 50, 100 times.”
Joey receives extra attention at school. “If he doesn’t achieve his goals, he gets more help,” Cathy said. “I think he’ll graduate high school with a modified program,” Cathy said. “They can go to school until they’re 21. So far, we haven’t held him back. I kind of wanted to last year, but how they worded it to me, when they hold him back, the hope is they’ll be able to catch up. And he’s not going to catch up.”
If being a parent is a full-time job, raising a premature child can be akin to working overtime. Those parents deal with many decisions about how to proceed with their child and must constantly challenge him at home to ensure that he continues to develop mentally, socially and emotionally.
Michelle Bode, MD, has specialized in neonatal medicine at Crouse Hospital and was Joey’s doctor for his stay in the Neonatal ICU (NICU) after he was born in March 2006.
“If you work with babies born prematurely at home and give that child that enriched environment, they’re going to do what they were meant to do,” Bode said. “But if you take that child and put them in a white room with nothing, their ability to develop is severely impaired.”
That’s why, for Joey to make progress in school, his learning cannot be confined to the classroom.
“We’re constantly talking to him and telling him why we’re doing something,” Cathy said. “My husband in the garage always talks to him and tells him what he’s doing—‘I’m using the side wrench, this is why.’”
After a successful overnight stay in the hospital for EEG monitoring in July 2012, the Pontos rewarded Joey with an iPad. That might seem like a strange gift for the then six-year-old, but it was a perfect choice for Joey.
“We bought him the iPad to challenge him,” Cathy said. “We put games on there. Math bingo, puzzles, memory games. Because his dexterity’s not good, he gets frustrated with a traditional puzzle. On the iPad, all he has to do is touch it.”
Cathy and Sam read to Joey every night and will drill him on a specific piece of information until he gets it down pat.
“Just randomly, a lot of times we would be riding in the car and I’d ask Joey, ‘Where do you live?’” Cathy said. “He’d say, ‘I don’t know,’ but I’d repeat it back to him.’”
Eventually, Joey remembered that and all sorts of other information – he even knows Sam’s account number when he orders parts from United Auto Supply.
The Pontos encourage Joey to try and answer questions that he knows the answer to and to solve his own problems when possible. But it’s tough for them to resist the urge to help when they see their son struggling. Cathy and Sam’s teenage daughters, Rachel, and Jennifer, also try to help Joey learn, but it’s a process that requires plenty of patience.
Building Joey’s physical skills is just as big of a challenge. He walks with a limp and has poor motor control in his right hand. Several years ago, Joey went through constraint therapy, which required having his arm in a cast, and he’s been enrolled in karate to build strength.
“We constantly remind him, ‘Joey, use your right hand.’” Cathy said. “Our big saying in this house is ‘accidents happen’ because he’s constantly dropping or spilling something. But as long as he doesn’t do it on purpose, he doesn’t get in trouble.”
Even for a premature birth, the Pontos’ situation is rare.
Normal gestation for a full-term baby is 40 weeks. Any baby born before then is early; any baby born before 37 weeks is considered premature.
According to the New York State Department of Health, Joey was one of 5,476 live births in Onondaga County in 2006. Of that number, 711 babies (13 percent) were born prematurely. And of those 711 babies, 129 (18 percent) – including Joey – were more than eight weeks premature.
“As you go backwards, the limits of viability – when we as neonatologists can intervene and save a child – is around 24 weeks,” Bode said. “When you start adding in multiple births, like twins or triplets, the risk [or prematurity] goes up.”
Joey Ponto was indeed a twin, though his sister, Anna, only survived for a few hours. The Pontos knew that Anna wasn’t going to make it once her kidneys began to fail at 18 weeks, but they weren’t prepared for Joey’s problems.
Bode said that families with premature babies normally have lots of concerns and that the best thing they can do is to ask questions and take advantage of the support systems in place.
“We encourage our families to talk to one another,” Bode said. “If they’re going to go on the Internet, make sure they go to websites that are well looked at for accuracy, renowned websites – Boston Children’s Hospital, the Mayo Clinic. Sites where there has been input not only from medical world, but from families.”
Cathy can manage Joey’s medicine and physical disabilities, but the most difficult thing for her is the thought that another medical problem is right around the corner.
“Every day I worry that that shunt is going to fail,” Cathy said. “He’s had so many surgeries and so much scar tissue up there that eventually that scar tissue will overgrow it and he will need his shunt replaced.”
Sam, an optimist, tries to focus on how far Joey’s come rather than the trials that may be ahead.
“He’s a lot better now,” Sam said. “Some of his issues, he’s got straightened out. I try to look for the positive things and not worry about the what-ifs.”
Joey does not think about those things. He prefers to spend his time listening to songs by Luke Bryan, playing Candy Crush Saga on his iPad or working on cars with his dad in the garage. And he makes his sisters smile whenever he’s around.
“You could be having the worst day, but he’s so witty, he’s so funny,” Rachel said.
Though Joey’s cognitive development is delayed, he will continue to make progress, according to Bode. Cathy does not expect him to go to college, but hopes that he will one day be able to live on his own. Ideally, he’d be able to learn a trade, and perhaps follow in his father’s footsteps as a mechanic.
The biggest obstacles in Joey’s way are his medications – he will need to remember to administer the proper doses at the proper time every day – and learning to drive. Joey loves to drive his motorized miniature John Deere tractor around the Pontos’ backyard, but driving a full-size car presents a different problem because of how weak the right side of his body is.
The Pontos have met every challenge so far and are committed to doing whatever Joey requires to succeed. Anna’s death will always sting, but Sam and Cathy prefer to think of all the joy Joey has brought them instead.
“We’re different people,” Cathy said. “It makes us appreciate our children more. We are very aware how precious life is. Going through that, it’s definitely brought us closer together. We’re stronger as a family.”