Pray for Noah's Heart

As parents faced with the denial from their insurance company for life-saving surgery, Nicci and Sean Connally will do anything for their son. If their insurance company says no, let us all come together to help them realize a great life for Noah by raising the money to make this happen. Every dollar counts!

For more on their journey, please read Noah's story as covered by the OCRegister...

Noah Connally will turn 4 on Aug. 18.

But already, the boy who was born with half a heart has been under the knife three times — first when he was still in his mother’s belly, again at seven days and a third time, at six months.

On Thursday, Aug. 8, if he’s lucky, there will be a fourth time at Boston Children’s Hospital. This would be a marathon surgery that could last more than 10 hours and his doctors say it’ll give Noah the best prognosis he’ll ever have.

But last week, an hour before they boarded a flight to Boston, the Connally's got a letter from their insurance company denying coverage for the potentially life-saving procedure. On Monday, Aug. 5, Anthem Blue Cross of California denied their appeal, as well, leaving the family devastated and deflated.

The last two months have been a time of frenzied fundraising for Noah’s parents, Niccole and Sean Connally, and his four older sisters. They put up lemonade stands, sold personal property, held garage sales with donated items and took monetary contributions from community members to make this medical trip to Boston possible.

Now, they have two days before the scheduled surgery date to make one final plea to Anthem – and hope for a miracle.

“It breaks my heart to even think that Noah might not get this surgery,” Niccole Connally said. “It took a village to send us to Boston.”

It’s going to be impossible for her and her husband – both public school teachers in Orange County – to raise more than $1 million to pay for the surgery on their own, Connally said.

Noah was born with a condition known as hypoplastic left heart syndrome, in which the left side of his heart wasn’t correctly formed, said Dr. Pierangelo Renella, a pediatric cardiologist at Children’s Hospital of Orange County, who has been caring for Noah since before he was born.

Renella said Monday that he has sent letters to the insurance company clarifying that Boston Children’s is Noah’s best option.

“This is an extremely complicated surgery not many hospitals are even equipped to perform,” he said. “And Boston Children’s is the pioneer in this procedure. While there may be doctors who can do it, there is no one locally that could give the due diligence that Boston Children’s can.”

No one from the insurance company has called him so far to discuss Noah’s case, Renella said.

Anthem Blue Cross’s decision dated Aug. 2, provided to the Register by the Connally's, states that the family’s request to cover the surgery was denied because Boston Children’s Hospital was not part of their plan network.

“Your plan does not cover services given by a provider that is outside of the plan network except where we do not have a provider in our network that has the same skills. Your plan network has advanced network providers with the same skills who are able to provide the requested service.”

A spokesman for Anthem Blue Cross declined to comment on the specifics of Noah’s case citing privacy laws. He issued this statement Monday: “Anthem Blue Cross is proud to offer one of the broadest provider networks in California, including many nationally recognized facilities that excel in treating patients with challenging, highly-complex medical needs.”

Typically, Noah would have undergone a surgery called the Fontan that would allow his one working ventricle to do the work of two ventricles.

This surgery is commonly performed at many hospitals nationwide, but children who undergo this procedure struggle as they grow because they have one ventricle doing the work of two, Renella said.

“This puts a lot of stress on the liver and the heart,” he said. “So, in the future, as adults, these patients often need liver and heart transplants. And if they don’t get those transplants, they could die.”

But the two-ventricle or biventricular, heart repair offered by Boston Children’s Hospital involves creating two functioning ventricles in a single procedure. Surgeons would reconstruct Noah’s heart using his own body parts. This procedure, Renella says, is Noah’s best shot at survival and undoubtedly, a better quality of life.

Noah would need to return to Boston for one more procedure in a few months. The Connallys, thanks to a generous donor, have raised money for that second anticipated trip to Boston as well.

“But, if we don’t get the insurance company’s approval for this procedure now, it’s going to be a huge setback,” Niccole Connally said.

Raising Noah and their four other children would have been overwhelming but for loving family members, friends and support from their church and school communities, she said. Noah also has struggled with growth, developmental and speech delays, not to mention a fear of hospitals.

“He begins to cry uncontrollably as soon as we pull into a parking structure,” she said. “It’s hard to deal with or even watch.”

When they heard Noah medically qualified for the surgery at Boston Children’s, there was a renewed sense of hope, Niccole Connally said. And now, she said, that hope is slowly fading.

If they don’t get the insurance company’s approval and the surgery is not done Thursday as planned, the Connallys say they will have to return home and reevaluate their options.

If they are to go with in-network doctors in California, Noah might only get the Fontan procedure, which would still leave him with one ventricle and a host of complications for the rest of his life, Connally said.

“When Noah qualified for the biventricular surgery, it felt like a miracle,” she said. “Our hope and prayer as parents are that our children outlive us. This was an opportunity to give our son a long-lasting life.”