In years past, babies born with heart issues had very little hope of living normal lives. Today, with lots of research, medical advances, and support, little ones have a much better chance.
By Catherine Ramsey Photographs by Maya and Taj Troy
“Mrs. Troy, we believe your daughter has Hypoplastic Left Heart Syndrome (HLHS). These were words that would change my life forever.”
Maya and Taj Troy discovered they were pregnant on December 22, 2012. The Troys were overjoyed with the idea of becoming first time parents. At 16 weeks they found out they would be having a girl they would name Mila. Maya was envisioning all the ruffles and bows and the future was looking bright. At her 24th week checkup, Maya remembers the sonographer looking for something and muttering under her breath that she couldn’t see it. The sonographer called the doctor into the examination room for a second opinion and he confirmed something was unusual with the fetus’s heart chamber. After more ultrasounds the diagnosis was certain. The Troy’s baby had Hypoplastic Left Heart Syndrome (HLHS), a single heart ventricle and not two like that of a normal, healthy heart. With no health or heart issues in their families, the couple was devastated.
With HLHS, the left side of the heart/ventricle doesn’t develop completely and so the single remaining ventricle has to do the work of two. This is a congenital heart defect (CHD), meaning it develops in the womb, and to date there are no known reasons why the heart develops this way in some babies.
Congenital heart defects account for 24% of infant deaths due to birth defects and more than 1,400 babies with CHD do not live to celebrate their first birthday. In the United States, approximately 4,800 babies born every year have one of seven critical congenital heart defects. Infants with one of these CHDs are at significant risk for death or disability if not diagnosed and treated soon after birth.
Thankfully, Mila Troy’s story is one of hope. The Troy family recently celebrated Mila’s first birthday with their happy, healthy baby. In her first year, Mila has triumphed over two open heart surgeries and numerous other medical issues related to her CHD. Mila’s incredible story of survival was featured at the American Heart Association’s Chef Challenge on October 2 which served as the kickoff to the upcoming 25th Anniversary Heart Ball celebration. The Troy family gave guests their personal account of the life-saving mission of the American Heart Association and encouraged others to support the research, programs and awareness funded by the AHA.
"So many parents are unable to celebrate many of life's milestones with their children because of the devastating effects of Congenital Heart Defects" said Maya Troy. "We are so grateful to the American Heart Association for funding and advocating for the research of these conditions, which will give these children the opportunity to grow up to live active, productive lives surrounded by the love and support of their families."
Parents of children with congenital heart defects, like the Troy family, along with the American Heart Association and their partners, advocated for the pulse oximetry bill. Pulse Oximetry screening is a non-invasive, simple test that measures the level of oxygen saturation in the blood and indicates how well the heart is functioning. On June 13, 2013 Governor Nikki Haley signed the pulse oximetry bill into law requiring all newborns in South Carolina to be screened for congenital heart defects (CHD) using pulse oximetry.
At the 25th Anniversary Midlands Heart Ball in February 2015, the American Heart Association will celebrate the great accomplishments made over the least 25 years including the passing of the pulse oximetry bill which will save so many lives of children born in South Carolina.
For more information about the Midlands Heart Ball, the pulse oximetry bill, or the Troy family please contact the American Heart Association at 803.806. 3091.