Dad pens song of hope for families of children with heart disease

Over the next month, a song began to take shape in Ant’s head.

I know it’s going to be alright, let’s make it through the night.

Just days earlier, Ant and his wife, Beth, with Finn and his big brother in tow, combed the marketplace in search of the perfect Christmas tree, stopping every so often to try to get their newborn to eat something.

Finn had arrived via water birth just 10 days earlier at Atlanta Medical Center, a little jaundiced but otherwise in good shape and sleeping through the night just like little Rhys, the brother before him. Beth felt really lucky to have two “good” babies and wasn’t the least bit alarmed that Finn preferred sleeping to taking his bottle.

But as the day wore on, Finn’s breathing became more labored and he started to turn blue.

The Abbotts took him to the hospital, and after running some tests and pumping fluids into him, doctors decided to airlift little Finn to Children’s Healthcare of Atlanta.

There was no room for them in the chopper, so Ant and Beth headed back in the car. Candace Foster, a cardiac nurse and friend of the family, agreed to meet Finn’s flight at Children’s Scottish Rite.

As Ant and Beth rushed up I-20 toward Atlanta and doctors checked out their little boy, Foster texted them updates every few minutes.

Sometime around midnight, the Abbotts arrived and Finn was transferred immediately to Children’s at Egleston, where they were met by a doctor who drew a picture of their baby’s badly damaged heart.

Besides having two holes in his heart and an abnormally small heart valve, there was another big problem — an aorta that was narrowing in one section and cutting off blood and oxygen supply to his lower extremities.

“I was in shock,” Beth Abbott said.

She’d had an easy pregnancy, and all indications were her baby was just fine.

“Every time I went in for a checkup, they’d comment, ‘His heartbeat is so strong,’” Beth remembered.

Even after his birth on Dec. 10, there’d been no indication something might be wrong. Yes, they’d detected a heart murmur, and yes, he made a wheezing sound when he breathed, but no one deemed it serious.

Congenital heart disease is the most common form of birth defects, and occurs in roughly 1 percent of live births, said Dr. Tim Slesnick, pediatric cardiologist at Children's Healthcare of Atlanta. This means that each year in the United States alone, roughly 40,000 babies are born with CHD. By comparison, cystic fibrosis occurs in 1 in 3,000 children, and childhood cancers occur in 1 in 6,250.

“Congenital heart disease represents a major health issue, and is something that affects far more patients and families than people realize,” Slesnick said.

The Abbotts would soon discover they weren’t alone, that babies with heart disease were so common there was a name for them — snowflakes.

Slesnick said it’s not that unusual for CHD to go undetected. It used to be a significant number of children died before a diagnosis could even be made, but improved screening tests have greatly reduced infant deaths. In addition, he said, survival rates from surgery are also improving.

Now doctors were telling the Abbotts that Finn needed surgery or he might die. On Christmas Eve.

Among those with CHD, roughly 25 percent will require heart surgery or intervention, sometimes at a very young age as was the case for Finn. Over the past 70 years, the spectrum of treatments and surgical options has improved greatly, so survival is now excellent even for the most complex heart lesions.

It took Finn’s surgeon, Dr. Brian Kogon, about three hours to repair Finn’s aorta. The operation went off without a hitch, but Finn’s recovery would take months.

While Finn healed, the Abbotts took turns going home. They got to know the other couples, two whose babies were admitted the same night as Finn.

Ant, a writer and producer of independent films by trade, marveled at how easily the babies’ mothers expressed their grief while he and the fathers barely spoke. Just stared into space.

He found it especially hard to give his pain words, but that song was taking shape in his heart and head.

I know it’s going to be alright, let’s make it through the night.

One night while at home taking care of Rhys, Ant built a sound booth using Pamper boxes that had been donated to the family. He stepped inside and let loose the emotions that had been stored up inside of him.

Open your eyes

Reach for the sky

Don’t you worry

I know we’ll make it through the night

When he was done, he knew he had a hit. Beth agreed.

“This is the best thing you’ve ever done,” she told him.

Beth would soon reach out to Grammy-nominated artist Mitch Parks, co-owner of 1971 Sounds in Decatur, and give him a copy of Ant’s rough cut. An hour later, the studio called.

We need to do this, studio manager Todd Lyons told Ant.

“Reach for the Sky,” released Nov. 22, became the Abbotts’ theme song, available now on iTunes, Spotify and other digital platforms. Though Finn isn’t quite out of the woods, Slesnick said the toddler’s prognosis is excellent.

“The piece we are watching most closely is the valve between the left atrium and left ventricle,” he said. “It is functioning well for him, and he has not needed any intervention on the valve, but we need to be very attentive to any changes in the valve as Finn grows older. He has regular check-ups with me to keep a close eye on things.”

Last Christmas, when Finchley arrived at Egleston, so did two other infants.

Finn is the only one still with us.

The Abbotts can’t explain why Finn made it and the other infants didn’t. No one can. But the couple wanted to share their story in hopes that no other family is caught unaware of CHD and the seriousness of the disease.

They also wanted to leave you with their song of hope — “Reach for the Sky.”

With another Christmas dawning, it seems the perfect gift. Christmas after all is the one season that invites us all to look forward in faith, the substance of things hoped for and the evidence of things unseen.