VACAVILLE — Aria Schilling is only 18 months old and knows how to keep an audience captive. She lifts up her top to expose a scar, the result of heart surgery in early December.
The Vacaville tot made news around the nation last fall as her parents battled their insurance provider to have the operation performed at the hospital, and with the doctor most familiar with their daughter’s health.
The Schillings said they spent months preparing for the surgery only to be told a few days before the scheduled date that it wouldn’t happen because they were using a physician and facility out of the insurer’s network.
Aria’s mother, Briggette Schilling, vented her frustration on Western Health Advantage’s Facebook page. Friends did the same.
Rick Heron, a spokesman for Western Health Advantage, said the family’s privacy request prohibits him from talking about the situation.
The media got wind and began calling. Briggette Schilling and her husband Johan Schilling appealed to the state’s Department of Managed Health Care, which ruled it was in Aria’s best interest to be operated on by the doctor she knew well at Children’s Hospital in Oakland.
Surgery was Dec. 4. Aria was home within a week. A new child soon began to emerge.
“She’s sassy now,” said sister Cambria Schilling, 10.
She’s a much more active Aria, her parents said.
“I’ve seen her personality blossom,” Johan Schilling said. “She’s the healthiest looking sick baby.”
Aria has taken to climbing on the furniture. When her father reminded her she didn’t belong on the ottomans, she looked at him, lifted up shirt and showed him the scar as reminder of what she’s endured in her young life.
She arrived about six weeks early, surrounded by a team of doctors who quickly whisked her away. The delivery happened so fast Briggette Schilling was still in her clothes.
Hours passed and the couple had yet to hold their daughter. Johan Schilling went looking for answers. He wasn’t prepared for what he was told. He called his wife and told her to come see baby Aria. The doctors weren’t expecting her to make it.
“We had no clue (things were so bad),” Briggette Schilling said. The couple met with a chaplain.
Their daughter’s heart rate was 220 beats per minute. At that rate, the heart would give out, the doctors told them. The normal heart rate for newborns is 120 to 160 beats per minute.
The decision was made to put her on life support. About 20 minutes before that was to happen, Aria’s heart spontaneously corrected itself.
“It had to be divine intervention,” Briggette Schilling said.
Aria was diagnosed with ventricular tachycardia, medical lingo for a rapid heart beat. The surgery in December repaired a valve between her heart and lungs, and several holes in her heart.
She’s now off the medications prescribed for her surgery. The family wants to get away for a day or weekend. The medication routine kept them homebound.
Minnie Mouse is Aria’s favorite. There’s plenty of toys to occupy her, including some she can sit on and ride.
One thing that is missing is chocolate, a traditional Valentine’s Day treat. The caffeine is not good for rapid heart beats, the Schillings said.
Aria will be dressed in her best clothes, many of them purchased from charities where proceeds go toward researching pediatric heart health.
Aria still has some health issues ahead of her. Another heart surgery may be needed in about 10 years. There is a chance the young girl has Noonan syndrome. One of its symptoms is heart defects.
The battle with their insurance provider put the couple in the spotlight. Other parents of children with heart conditions have reached out to them.
Advocacy is a great way to use the excess energy, Johan Schilling said. One of their biggest passions is getting more funding to research heart conditions in children.
While their story has a happy ending, the Schillings also mourn for the 13 babies they know of who have died in the past two months from heart troubles similar to Aria’s.
“We cherish every moment with her,” Briggette Schilling said.
Reach Amy Maginnis-Honey at 427-6957 or firstname.lastname@example.org. Follow her on Twitter at www.twitter.com/amaginnisdr.