During a routine prenatal appointment, we discovered that our second child, a girl, would be born with a severe, complex congenital heart defect called Tricuspid Atresia (Single Ventricle Defect). In layman’s terms, she would be born without a right ventricle- the chamber of the heart that is responsible for pumping oxygen-poor blood to the lungs for re-oxygenation.
Hindsight being what it is, today we can tell you what a blessing we feel we had being given those four months to learn about her condition, talk with doctors and pray.
Lucy Kate was born on August 27, 2003. From the outside, looked like every other healthy baby born that day- pink and screaming. Her heart transitioned to the outside world better than we could have hoped for and she came home with us at three days old. She was a beautiful, normal baby with a very abnormal heart.
Her first few months of life were full of doctor visits, tests and prescriptions. At five months old, her cardiologist told us that the first part of her 2 part reconstruction was imminent and we scheduled our baby girl for her first open heart surgery on Valentine’s Day 2004- she was 5 months old. This procedure rerouted blood flow from the lower half of her body around the right side of her heart. Lucy came home after seven days with an angry, imperfect scar that ran the length of her otherwise tiny and perfect little chest. Lucy continued to heal and recover- she learned to sit up, crawl and walk.
Lucy’s second repair came just before she turned two. She received her Fontan procedure, named after the doctor who pioneered the procedure in the 1968. The circulation to the upper half of her body was rerouted around the right side of her heart. She recovered well and was home in eight days.
Since becoming parents to a heart child, we have learned many things we never thought we’d need to know. Things like congenital heart defects are America’s #1 birth defect, affecting nearly 1 out of every 110 live births. Sadly, 20% of these babies do not live to celebrate their first birthdays.
Funding for research that we hope will one day eliminate CHDs goes underfunded- currently.
In the United States, twice as many children die of congenital heart defects than of all other forms of childhood cancer and funding for pediatric cancer is five times higher than funding for congenital heart defects.
Research HAS made a difference in Lucy’s life as well as lives of thousands of children and their families. In the past decade, death rates for congenital heart defects have declined by 30 percent because of advances made through research.
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