TOLEDO, Ohio — According to the CDC, 1 in 100 children in the U.S. is born with a congenital heart disease, affecting about 40,000 births per year.
WTOL 11 Managing Editor Josh Love and his wife Lindsay, are part of that statistic. While they knew the chances of having a child with a CDH were 50%, it wasn't easy to hear the diagnosis for their daughter, Josie.
Josie was born in August 2019. She's undergone three surgeries before turning four years old, but it has been worth it to see her health improve, Josh and Lindsay said.
"She loves preschool. She loves the TV show called 'Bluey.' She's always happy. She never has a sad moment," Lindsay said.
Josie's cardiologist, Promedica Toledo Hospital's Pediatric Cardiologist Dr. Claudeen Whitfield, said she's proud of Josie.
"This little girl is like a bundle of energy, is constantly bouncing and no matter what's going on during the day, she just makes you smile," Whitfield said. "She, as they say, 'bring your own sunshine.' This is what this girl does."
During one of Lindsay's scans early in the pregnancy, the Loves learned Josie would struggle.
"Josie's heart wasn't fully formed. She was diagnosed with what was called a full AV Canal Defect, which can be more serious than what she had." Josh said. "It essentially means the center of her heart wasn't formed correctly ... oxygenated and unoxygenated blood mix together. And she told us, expect that when Josie's born, you guys will spend time in the NICU and she may even need surgery right away."
Josie's health was well enough after her birth to push off the surgery, so they did, Whitfield said.
"The good thing about her is that her major hole was between the two small chambers. The hole between the two large chambers of ventricles was very, very small. And because of that, she did not go into heart failure," Whitfield said.
But eventually, in July 2022, Josie did have to undergo surgery. Lindsay said there was immense pain and fear, but the surgery was a success.
"The longest five hours of our lives. Saying goodbye to her, never knowing if she's going make it or not," Lindsay said. "When she was done with her surgery on a Tuesday, that Thursday she was running around the hospital."
While Josie's quality of life has greatly improved, Whitfield said CDH isn't curable and must be monitored closely. So, Josie will still need to see a cardiologist throughout her life.
"We hope that she doesn't grow up to resent the scar on her chest," Josh said. "It's kind of a cool battle wound ... she went through five hours of heart surgery like a champion."
While Josie's story is a happy one, Josh and Lindsay said everyone isn't as lucky as them. CDC found about 1 in 4 babies with a CHD have a critical diagnosis and generally need some form of procedure in the first year of their lives.
Whitfield said parents who receive learn their child is diagnosed with a CHD shouldn't feel like their worlds are ending.
"Just because you have a heart defect, does not mean that your life is going to end," Whitfield said. "Just have a positive outlook and realize that although your child has a Congenital Heart Disease, all is not lost. That they can have a fulfilling life like any other child their age."