The story of Renee and Jake Peerless' life together had a fairy tale quality. The two met as teenagers in Connecticut. Years later they reconnected at a party, and their romance blossomed.
"I remember in high school, being around him and having a crush on him," said Renee. "He's absolutely gorgeous."
In the summer of 2008, the young couple was just settling into their lives together as husband and wife when Jake, a military commander in charge of a canine detachment, got the call that he was being deployed to Iraq. The day Jake left for duty was not easy.
"I just hugged him as many times as I could," recalled Renee, "and I said that we'd get through it like everything else."
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Just two weeks later, Renee discovered that she was pregnant with their first child. For the couple, the news was as thrilling as it was unexpected.
"I wanted the ideal situation, my husband home and us living in our house and us having a child, and it just didn't work out that way," Renee said. In the weeks that followed, Renee sent Jake every ultrasound picture and photos of her growing belly.
Four months into the pregnancy, she went for routine genetic testing, a decision she made mostly because she wanted more ultrasound pictures to send Jake. After confirming Renee's hunch that the baby was a boy, the technician spent a long time examining the baby's heart.
"The tech looked at me and she said, 'Renee, I have to be honest with you. The reason that I'm looking at the heart so long is because it doesn't look right. Something's wrong with the baby's heart.'"
Within days, Renee was referred to a team of pediatric heart specialists at Children's Hospital in Boston, one of the leading pediatric hospitals in the country. There doctors confirmed that the baby had a rare congenital heart defect called Hypoplastic Left Heart Syndrome, also known as HLHS -- a condition that affects up to four out of every 10,000 births.
"I thought, this just isn't fair," said Renee. "I remember being at that place, you know, the woe is me. My husband isn't here, I have a sick baby."
With HLHS, the left ventricle of the heart is underdeveloped, preventing blood from flowing properly to the rest of the body. If left untreated, the condition is fatal -- and there is no cure. Hope for kids born with the disease rests primarily on a series of three surgeries during the first few years of life.
According to Dr. Emile Bacha, who treated Renee at Children's Hospital Boston and currently heads the Pediatric Cardiac Surgery program at New York Presbyterian Hospital/Columbia Medical Center, Hypoplastic Left Heart Syndrome is one of the top three heart defects requiring surgery in newborns.
The typical management of these patients is a procedure called a Norwood Operation.
"We've been successful at treating Hypoplastic Left Heart Syndrome only for the past 25 years or so," Bacha said. "The Norwood Operation was developed in the early eighties. [Before that] most kids would die with this malformation."
Now, with early screening, it is possible to diagnose the disease in time to set a plan for surgery, Bacha said.
Lenore Cameron founded a national congenital heart disease (CHD) support organization called Little Hearts, Inc., following her own son's battle with HLHS. Cameron stressed the importance of pre-natal screening and diagnosis.