PLATTSBURGH — Four-month-old Isaac Smart looks and acts like any other child his age.
”You actually wouldn’t know that anything is wrong with him,” said Smart’s mother, Amy Upton, of Plattsburgh. “He’s just so happy.”
But Smart has been sick since he was 6 weeks old, Upton, 23, said.
Smart has aortic coarctation, meaning there is a kink in his aorta, which caused his heart to be enlarged, Upton said.
He was born on Jan. 10 with the condition.
Pinpointing the right diagnosis wasn’t easy, Upton said.
“It was a fight. We went through four doctors.”
Upton noticed that Smart was having terrible bloody noses with clotting, coughing and high fevers for about three weeks.
Doctors told her it was from the dry air.
But Upton knew something was wrong.
After many tests, including one that was a false positive for respiratory syncytial virus, a doctor at CVPH Medical Center in Plattsburgh listened to Smart’s heart and detected a large heart murmur.
When an X-ray was taken of his chest, Smart’s enlarged heart was immediately apparent.
The infant was referred to Fletcher Allen Medical Center in Burlington for an Echocardiogram, a sonogram of Smart’s heart.
The diagnosis of aortic coarctation came soon after.
“I immediately started balling,” Upton said, holding Isaac on her lap.
Smart has increased blood pressure in his upper body and decreased blood flow to his lower extremities, Upton said.
And the heart “overworks itself,” Upton said, which causes the enlargement.
Without surgery, Smart could have heart failure, a stroke or a heart attack, she said.
Without the proper treatment, Smart would be expected to live to be only 40 years old, his mother said.
Smart’s surgery is scheduled for May 21 at Albany Medical Center.
Doctors told Upton they won’t know what the surgery will entail until they are able to view her son’s aorta during the operation.
That uncertainty is unsettling to both Upton and her mother, Tammy Ezero, who is concerned for her daughter as well as her two grandsons.
“She’s got a lot on her plate. I pray for her all the time.”
After the operation, her son will spend a few days in the Pediatric Intensive Care Unit then Upton will travel back to Fletcher Allen for follow-up appointments.
Upton isn’t yet sure how much the operation will cost and if Isaac’s insurance will cover the entire cost.
“We’re going to have expenses to cover,” Upton said.
“Whatever it is, we’ll manage,” Ezero said. “He can’t live without it.”
’AMAZING’ TO BE A MOM
Upton’s other child, Ethan Higgins, has also had health problems since he was less than 1 year old.
Higgins has a spot on his head that will need to be removed once he is about 10 years old since it will turn cancerous at the start of puberty, Upton said.
Upton’s advice to other mothers whose children have health conditions is to reach out to the community for support.
“For anybody in need ... your community is the best place to go.”
Upton gets support from her mother and her best friend, Monica Ackey, with whom she attended Peru High School.
Ackey is currently pregnant with her fourth child, Upton said, and the two moms often get together for play dates.
But, despite support from friends and family, being a mother to two children with special needs is difficult.
“It’s stressful,” Upton said with tears in her eyes. “It’s something you don’t want your children to go through.”
But each day is a joy, she said.
“Every day; it’s an accomplishment,” she said. “It’s amazing to be a mother.
“It’s challenging but it’s the best thing I could ask for. I wouldn’t change it for the world.”
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A fundraiser to raise money for Isaac's health care costs will be held from 5 to 7 p.m. Friday, May 17, at the Keeseville Elks Lodge.
A barbecue dinner will be provided in exchange for a donation. There will also be a Chinese auction, a bake sale and music provided by a disc jockey.
All proceeds will go into an account established for Isaac, Upton said. Donations may also be sent to Isaac Smart, P.O. Box 447, Peru NY 12972.