Family shares story of 1-year-old's battle with congenital heart defect

(⚠️ CAUTION: This story contains details that some may find disturbing or unsettling. Discretion is advised.)

PHOENIX (FOX 10) -- Congenital heart defect affects one out of every 100 live births. It is the most common birth defect in children, but strides are being made to make sure these children survive and live normal lives.

After giving birth to two beautiful daughters, Alexandra and Samuel Shelton were blessed with an adorable baby boy, Elliott. Unlike his sisters, who were born at home, Elliott was born in a different way, as he was diagnosed with heart abnormalities in the womb.

"How many people that I know that are connected in this community, and it's a really tight-knit community with the heart families," said Alexandra.

Due to his congenital heart defect, Elliott had his first open heart surgery at just 17 days old. His doctor told them his bones were so soft, they cut through his ribs with just a scissor.

"I think as his dad and man, we try to keep everything together, and we have to be strong for the family," said Samuel.

Then, just five months later, Elliott had another surgery. The family learned a lesson with the ordeal.

"It is hard, and it's OK to cry," said Samuel. "It's OK to ask questions why."

The Sheltons say while there were tough times, they also made great friendships, especially with other heart families.

"Everybody's really cheering each other on," said Alexandra. "All of our diagnoses for kids are really different, but we all feel the same emotions."

Elliot recently celebrated this first birthday, which is a huge milestone for a baby with Congenital Heart Defect. Their doctor, Daniel Velez with Phoenix Children's Hospital, talked about the great strides made, from the procedures to the medication.

"In the past, we used to lose 15 to 20% of patients between the first two stages," said Dr. Velez "At Phoenix Children's, we're up to three with no patients. All patients having survived."

As for how the future looks for babies like Elliott, Dr. Velez weighed in.

"Some limitations," said Dr. Velez. "Maybe they won't be the fastest kid in the group, maybe they will, but I've seen them all the way to NCAA Division I gymnast."

So, there is hope, and the Sheltons say they're sharing their story to raise awareness of congenital heart defect, which affects so many families. They also hope to spur more research and support.

"When he is a teenager, that there's going to be credible options for him that are existing right now," said Alexandra. "We want to be a catalyst for change in that aspect too."

Elliott's parents were so thankful to Phoenix Children's, and say they look forward to seeing Elliott grow and overcome more challenges. This hospital has also received top ratings from the Society of Thoracic Surgeons for the sixth time in a row.