Breathing easy thanks to Children’s Memorial

Nicholas, who also has a baby sister, Victoria, poses with younger brother Nathan.

When Nicholas Coates was born at an area hospital unable to breathe on his own, his physicians quickly realized he needed specialized care to determine what was causing his respiratory distress. Within hours he arrived at Children’s Memorial Hospital, known for its expertise in treating the most critically ill children. There he spent the first six months of his life being cared for by a variety of specialists for a rare condition that caused complete paralysis of his diaphragm, the primary muscle used for breathing.

When Nicholas arrived at the hospital, he needed a ventilator, a mechanical device that helped him breathe. Because air had collected in the space around his lungs, a tube had also been inserted into his chest to release the air and help expand a partially inflated lung.

When his mom, Jamie, first saw her baby in Children’s Memorial’s Neonatal Intensive Care Unit (NICU), she was shocked.

“I had only seen Nicholas for about 30 seconds before he was taken to Children’s, so it was hard seeing this tiny baby attached to all these tubes and machines,” she says.

Nicholas underwent a number of tests, including a muscle biopsy, genetic testing and brain scans, as a multidisciplinary team of specialists searched for the cause of his breathing problems. The team included experts from Children’s Memorial’s Divisions of Neonatolgy, Otolaryngology, Pediatric Surgery and Pulmonary Medicine. Finally, a diagnosis was made: Nicholas had bilateral diaphragmatic paralysis. Over those six months, as efforts to wean Nicholas from the ventilator proved unsuccessful, he underwent tracheostomy surgery to create an opening in his wind pipe to allow for direct access to the ventilator.

Over Nicholas’ long hospitalization, Jamie and Nicholas’ dad, Ty, became intimately familiar with Children’s Memorial and its staff. “I was at the hospital from morning to night,” says Jamie. “In fact, I was there so much I felt like I was an employee! I spent a lot of time snuggling Nicholas in the NICU and talking with other families.”

After Nicholas had been transferred to the Children’s Memorial’s Transitional Care Unit, Jamie and Ty received instruction through the Pulmonary Habilitation Program in the care he would need after he returned home, including the maintenance of both his tracheostomy tube and the feeding tube he needed for nourishment. They also learned how to operate the equipment he required, including a ventilator, oxygen tank and suction machine, and learned cardiopulmonary resuscitation (CPR).

Jamie and Ty finally brought Nicholas home six months after he arrived at Children’s Memorial. They found a stork on their front lawn, a house full of balloons, gifts from friends and family and a home-cooked meal from Jamie’s family waiting for them.

In addition to in-home nursing, Nicholas needed physical, occupational and speech therapy. Over the next three years he was gradually weaned from his ventilator. There were also a few setbacks. He was diagnosed with Type 1 diabetes, and was briefly hospitalized for a blood clot in his leg. Finally, the landmark day arrived when doctors said Nicholas was healthy enough to breathe without his ventilator. As Jamie wrote in her blog, “We never in a million years thought we would see this day.”

Jamie has channeled some of her experiences as an anxious parent of a child with a serious illness by becoming a parent-volunteer in Children’s Memorial’s ParentWISE program. The program connects parents of children currently undergoing care with parents like Jamie who have gone through similar experiences.

“It’s very important to talk to these families who are going through some of the same issues we did and lend support,” she says. “To let them know that they are not alone, and put them at ease by sharing some of my own experiences.”

Today, 5-year-old Nicholas is a healthy, active kindergartener, who loves to go swimming, ride his bike, draw and play video games with his dad. He will also be one of the inspirational children featured in ABC7’s “Champions of Children’s Memorial” broadcast this summer.

“It makes me cry when I see Nicholas outside playing catch with Ty, something we thought we’d never see,” says Jamie. “He truly is a miracle.”

If you’d like to help kids like Nicholas, donate now.