The two blond haired boys ran back and forth past each other grabbing toy after toy, and even sneaking in a smile or two for the camera while dad stood nearby smiling at their carefree laughs and playfulness.
It was a typical morning for most 3 year olds, but for Brent and his twin brother Aiden, the morning also included a trip to St. Mary’s Hospital for Children in Bayside, NY.
Brent and Aiden were born prematurely at 34 ½ weeks. Premature babies can develop medical complications, long-term disabilities, and feeding issues which may require specialized care and support for months, and often years, after they are born.
Overjoyed by the birth of their bouncing baby boys, Robert and Sharon didn’t entertain the thought of complications, nor did they know anything about premature births.
It was time to feed the boys. While Aiden seemed to be eating normally, Brent was accepting formula, but was fatiguing easily during feedings. It seemed normal at first and Sharon just kept on trying. But, after several tests, Doctors at Montefiore Hospital diagnosed Brent with a Congenital Heart Defect and Congenital Diaphragmatic Hernia which were thought to be causing his eating complications. Doctors were convinced surgery would help. At a tender 3 months old Brent underwent corrective cardiac repair surgery.
Following surgery, Brent developed a severe aversion to the bottle nipple. After more testing, Brent was diagnosed with Gastroesophageal reflux disease (GERD) and put on multiple medications. A nasogastric intubation (NG) tube was also inserted to help him eat. Robert and Sharon were once again reassured Brent’s eating would get better and he was discharged from the NICU.
But the worse was to come. Brent’s vomiting spells became worse and even with multiple formula changes, he was not tolerating well. Mom and Dad did everything by the book and more, including charting his feedings, keeping note of how much he was vomiting, making phone calls to specialists, taking Brent to several pediatricians, and gaining as much information as they could from co-workers, books, and doctors. At 6 months of age, they tried spoon feeding baby food. Brent accepted the spoon for only a few days before he developed an aversion and cried upon sight of the spoon.
All the while, both Brent and Aiden were receiving physical, occupational and speech therapy and special education services- yet no one seemed concerned about Brent’s feeding disorder.
At 9-months old Brent returned under the knife again for congenital diaphragmatic hernia repair and a g-tube was also inserted to address his oral aversions.
“We were lost, we needed to find help. Someone to give us answers,” said Robert.
That’s when Robert and Sharon found St. Mary’s Healthcare System for Children, a premier provider of post-acute pediatric care for children and families with special needs.
Brent was evaluated by the interdisciplinary feeding team at The Cindy & Tod Johnson Center for Pediatric Feeding Disorders Program in March 2011. St. Mary’s Feeding Disorders Program is the only interdisciplinary feeding program in New York State that helps diagnose and treat feeding disorders. A renowned team includes a pediatric gastroenterologist, speech language pathologists, a behavioral psychologist, a nutritionist, a pediatric nurse practitioner, and feeding technicians.
A feeding disorder occurs when a child cannot consume enough nutrition by mouth to sustain weight and proper development. It is estimated that nearly 25% of children will have a feeding disorder. 80% of children with special healthcare needs and developmental delays are at highest risk. In recent years, St. Mary’s has seen an increase in feeding disorders in babies born prematurely, like Brent.
Brent was admitted to St. Mary’s 8-week feeding program in April 2012. With the help of St. Mary’s caregivers, Brent began to progress with his feeding skills. His g-tube feedings decreased throughout the day and he began to accept, chew and swallow larger quantities of food and drink formula by mouth.
In June, Brent successfully graduated out of the program. He reached an acceptable plateau and St. Mary’s therapists were convinced he was ready for the next stage.
But before graduation, Brent’s parents and nurse, Albert, were all trained with appropriate feeding protocols and eating habits for Brent. The training prepared them for meals at home together or any setting. Brent’s twin brother, Aiden, was even helping out!
“We joke around and call it ‘boot camp’ because of the high intensity nature of the program that includes training the caregivers for carryover of the treatment protocol in a variety of settings. We want them to be prepared for all and any situations,” said Justine Burns, St. Mary’s Speech Pathologist.
“St. Mary’s is really the worlds best kept secret,” said Robert. “We’re not alone anymore and it’s a great feeling.”
Brent attended 4-weeks of follow up visits to see how he was doing, and not to the surprise of mom or dad, Brent was growing, thriving and eating well.
“We’ve all grown, changed and learned so much. It’s like magic here at St. Mary’s,” said Sharon.
Robert, Sharon, Albert, Aiden and Brent all went to Five Guys, a first time restaurant outing for Brent, where he not only ate a full meal, but also adapted well to the restaurant setting. The accomplishment was well rewarded with hugs and kisses and lots of praise from his entire family.