‘Hoping and Praying’ After Baby Born with Heart Defect
By Mary Frances Emmons, Editorial Contributor
Mark Tremonti is used to achieving the impossible.
The Grammy-winning guitarist is a founding member of the hard-rock supergroup Creed and was named one of the greatest heavy-metal guitarists of all time by Total Guitar magazine.
But in late 2020, Tremonti; his wife, Victoria; and their two teenage sons faced a challenge for which they did not know how to prepare: The baby girl Victoria was carrying had the chromosomal abnormality that causes Down syndrome.
“When I found out Stella would have Down syndrome, it scared me,” Tremonti says. “I didn’t know what to expect.”
He threw himself into welcoming her any way he could, spending the next month painting a spectacular mural — “a big, flowery scene” — on the wall of her Windermere nursery. “I just wanted to bring her into this world with every opportunity.”
But there was scarier news to come.
Hoping and Praying
“I actually met Stella before she was born,” says Dr. Elise Riddle, a pediatric cardiologist specializing in congenital cardiology at the Heart Center at Orlando Health Arnold Palmer Hospital for Children.
Down syndrome is a genetic disorder that causes developmental delays and a host of other problems — including heart defects. One of the most common is ventricular septal defect (VSD), in which a hole forms between the lower chambers of the heart, causing excess blood flow and pressure — a problem for about 1 in every 240 babies born in the U.S. each year, according to the Centers for Disease Control and Prevention.
For children with Down syndrome, the incidence of heart defects is much higher — as many as half are affected.
“We can actually diagnose very complex defects at a very young age in utero,” Dr. Riddle says. When Dr. Riddle met the Tremontis, Victoria was at 22 weeks gestation and Stella’s heart was “smaller than a cherry.” It was fully developed, a milestone that occurs by about eight weeks of gestation.
An echocardiogram confirmed their fears: Stella had a hole in her tiny heart.
VSD is correctible with surgery, and sometimes treatment is not necessary. Over time, a small to moderate hole can close by itself. But there is a complication: Left untreated for too long, VSD can lead to pulmonary hypertension, in which pressure in the lungs becomes fatally high. If pulmonary hypertension becomes extreme, heart surgery is no longer an option.
“When a child is born with a heart defect that could need surgery, there’s a lot of hope it will close without intervention,” Dr. Riddle says. Open-heart surgery on a child “can be a scary idea for a family.”
Victoria Tremonti knew she was in good hands.
“Dr. Riddle called me to say, ‘I just want to let you know that I'm here for you.' She went that extra mile, and she didn't have to do that,” Victoria Tremonti says.
Over months of monitoring that required frequent visits with Dr. Riddle, the hole sometimes seemed smaller. Sometimes it seemed bigger. “It was a rollercoaster ride for every day of that year,” Tremonti says. “It was the top thing on our minds, hoping and praying it would heal itself.”
By the time she was about 9 months old, it was obvious to all: Stella would need surgery. For Tremonti, the news triggered old fears.
“When I was a child, an ambulance pulled up at our house and my father was taken away,” he remembers. “He had to have open-heart surgery — he was pretty much laid low for months. That’s a very big deal for an adult, so when this happened to my baby girl, it was just the worst time of my life, without exaggeration. I went through that surgery a million times in my head, just imagining how it would play out.”
In late 2021 in preparation for surgery, Stella underwent a heart catheterization – a scary procedure for her parents. A video sensor threaded up Stella’s leg showed her lung pressure was acceptable for open-heart surgery.
The repair is surprisingly quick. After the heart is opened, a half-inch oval patch — which can be made of artificial materials or the natural lining of the heart — is sewn in place using the most delicate of instruments, all scaled to a tiny size. The entire procedure takes only two to three hours.
Dr. William DeCampli, the pediatric cardiovascular surgeon at Orlando Health Arnold Palmer who operated on Stella, has been doing this surgery for 20 years. He gently deflects any praise.
“Quite honestly, this was a routine procedure,” he says. “It’s our standard of practice at Orlando Health Arnold Palmer Hospital to take care of congenital heart defects in infancy, just to get the problem corrected as soon as possible, so these babies don’t grow up facing an operation later in life.”
Three days after the surgery, Stella went home with her family and has thrived ever since. Dr. DeCampli credits the family, stressing the sometimes-intangible ways that parental love and care can influence a baby’s strength and recovery.
“It’s subjective, but I believe it,” he says. “Stella’s parents came directly from heaven, in my opinion. She came in strong and got through the operation like a champ.”
‘Stella Was a Star’
Not so long ago, when cultural biases about Down syndrome extended to the medical community, Stella’s heart condition would have shortened her life. “Children with Down syndrome were not even offered those curative surgeries in the past,” Dr. Riddle says. “We’ve come a long way.”
When I found out Stella would have Down syndrome, it scared me. I didn’t know what to expect. – Mark Tremonti
Today, Stella can look forward to a life of doing what she wants to do — and no more surgeries.
“Stella really was a star,” Dr. DeCampli says of her rapid recovery. But her success is not unique. “It shows the progress we’ve made over the years — the vast majority of these children do well and grow up pretty much as they would normally.”
“If Stella wants to be in the Special Olympics or sing with her father someday, she can absolutely do those things,” Dr. Riddle says.
Tremonti says it’s already happening.
“She does sing with me,” says the musician, who also formed the platinum-album-selling group Alter Bridge and heavy-metal band Tremonti. “A lot of children with Down syndrome have difficulty with speech, and singing works that skill. I sing to her every day.”
Thankful for the care they received and the living and healthy miracle of Stella, the Tremontis were eager to find a way to give back. “Once we got the diagnosis with Stella, I'm like, ‘All right, this is my new purpose,’ ” Tremonti says. “So, I called my manager and I said, "I want to do a record of Frank Sinatra songs for charity.”
Crooning American standards with more than a dozen members of Sinatra’s touring band isn’t exactly what fans of the hard rocker would expect. And that’s the point. “Take a Chance for Charity means do something that your fan base has no idea that you're capable of to raise money for charity,” Tremonti says. “And we just keep continuing to build it.”
Take a Chance For Charity has already raised over $1 million for the National Down Syndrome Society.
“My goal is to raise $100 million,” Tremonti says.
Now at 2 years old, Stella has already made a huge impact in the Down syndrome community. “Stella's just become this powerful force for good,” he says. “And she makes everybody just want to be better and do good for other people.”