August 9, 2008
Benefit to help newborn with rare birth defect
Joe McIntyre/staff photographer
James Barnard and Ashley Oliver with their 5-month-old son, Damian Barnard. The couple will be having a benefit jamboree Aug. 17 at the Cortland American Legion on Tompkins Street for Damian, who was diagnosed with a rare birth defect called Eagle-Barrett Syndrome.
Ashley Oliver never expected anything would be wrong with the baby she and her boyfriend, James Barnard, were trying to have. But three months into her pregnancy, doctors told the couple something was wrong.
By six months into Oliver’s pregnancy, their son was diagnosed with Eagle-Barrett Syndrome, or Prune Belly, a condition that affects one in 40,000 births in the United States, and affects the abdominal muscles, kidneys, bones, heart and lungs. Ninety-five percent of the cases are found in males.
Damian Barnard, now 5 months old, urinates out of an incision in his stomach that is connected to his bladder, and is in need of constant care, medical examinations and various surgeries.
“(The doctors) were worried he would not survive birth and asked if we wanted to abort the baby,” said Barnard, 21. “There was no way we were going to (abort) … He is my miracle baby.”
Twenty percent of infants with the syndrome are stillborn, 30 percent die of renal failure or urosepsis within the first two years of life and the remaining 50 percent have varying degrees of urinary pathology, according to www.prunebelly.org.
As a result of needing constant care, Oliver, 19, is on leave from the Army, and she and Barnard struggle with the costs to travel to the specialists Damian needs to see at least once a week, especially with gas prices hovering above $4 a gallon in Cortland County.
To help with their travel expenses, to Syracuse and Rochester, overnight stays in hotels while Damian undergoes medical treatments and surgeries, and co-pays insurance does not cover for Damian’s condition, Oliver’s mother, Bobbi Jo Coville, has organized a benefit jamboree.
The jamboree, scheduled for 1 to 8 p.m. Aug. 17, will be held at the American Legion on Tompkins Street. Food and drinks, raffles and door prizes, and musical entertainment will be provided for a $5 cover fee.
The couple is hoping to use the proceeds from the jamboree for their traveling expenses each week, as well as in September when Damian will have another surgery that doctor’s hope will help his condition.
“It’s going to be an eight to 10 hour surgery,” Barnard said. “The doctors hope it will correct all the things wrong. If it doesn’t go as they plan, then he will probably need a kidney transplant.”
Although there is no cure, repairs to the urinary tract can be made. But sometimes, despite the best treatment, a child’s kidneys can fail. The treatment for this is either dialysis or kidney transplantation.
There is a distinctive set of physical problems that a child is born with when they have prune belly syndrome, including weak or missing front abdominal muscles, abnormally developed parts of the urinary tract, and in males, most of the infants affected, the testes stay up inside the abdomen and do not come down into the scrotum.
There may be other physical problems in the infant, such as spinal curvature, hip dislocations, clubfoot and respiratory or heart problems.
Damian has a noticeable lump on the right side of his head and a “pot belly” appearance to his stomach from his missing abdominal muscles, clubfeet and a heart murmur.
He will have at least three more surgeries, including total abdominal reconstruction, before his condition is stabilized.
Money is tight for the couple, who live together in the city, especially after July 4 when Barnard broke his arm, putting him out of work.
“It’s been overwhelming. We haven’t paid a bill since he was born,” Barnard said. “It’s been pretty hard. We get into a lot of fights but it’s not about us anymore.”
“He’s our baby,” he added, crying.
The days Damian needs to go to the doctors for a routine exam, Oliver and Bernard pay anywhere from $30 to $100, driving to Syracuse or Rochester and back home.
“If he gets a fever, we have to go straight to Syracuse because Cortland (Regional Medical Center) can’t treat him,” Barnard said. “If they say it’s bad, then it’s straight to Rochester from Syracuse.”
But even with all the constraints put on this young family, the couple remains optimistic and hopes for a good turnout at the benefit.
An account at the Bank of America on Groton Avenue set up so people can donate to Damian’s cause is set up under the names of Ashley Oliver and Damian Barnard.
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