Lucy's Story

When my husband and I were 24 weeks pregnant with our second child, a girl, we were given a routine ultrasound in which it was discovered our baby would be born with a severe congenital heart defect called tricuspid atresia, a ventricular septal defect (VSD - a hole between her ventricles) and an atrial septal defect (ASD - a hole between her atria). In layman's terms, she would be born with no right ventricle and two large holes in her heart.

This diagnosis devastated both of us - neither one of us had ever even spent a night in a hospital. We spent the next 4 months of our pregnancy visiting doctors, researching her condition, and preparing for her arrival. We were told she would survive in utero with no complications, as her circulation was dependent upon mine. The trouble would manifest itself after she was born and her heart had to function on its own. We could expect at least a three-part surgical treatment to "correct" the defect during the first 2 years of her life. We later understood that babies born with CHDs are never cured, only treated with surgeries and drugs. And although such treatments have come a long way in the last 30 years, there is still no cure and no prevention of such defects. There is no guarantee that a child born with a CHD will survive his/her first year of life.

Lucy was born on August 27, 2003, via cesarean section. She was pink and screaming. One would have never known anything was wrong by looking at her. She spent 3 days in the NICU and went home with me. We were warned to watch for congestive heart failure when we got home as the hole between her ventricles could, if not monitored carefully, flood her little lungs with blood. Miraculously, her VSD self-regulated itself by closing just enough to stave off the first of the three-part procedure we'd been warned of.

She endured many echocardiograms, had trouble gaining weight, but managed to stay stable until her fifth month of life when her first surgical treatment was performed at Hope Children's Hospital in Oak Lawn. She was given a procedure called a bidirectional Glenn - a procedure in which her superior vena cava is connected directly to the right branch of her pulmonary artery. She recovered well and was home in 8 days. She healed well and continued to thrive and develop at a normal rate - something we felt blessed with, as not all CHD babies have the successful and relatively easy recovery that Lucy had.

On June 2, 2005, Lucy endured her second - and hopefully final - surgical treatment at Hope. This time, her surgeon, Dr. Michel Ilbawi and his team, performed an extra-cardiac Fontan procedure in which they connected her inferior vena cava to her pulmonary artery using a Gortex® tube. Her "replumbing" was complete - the doctors had essentially redirected blood flow directly to her lungs by bypassing the right side of her heart.

For our daughter, nothing else can be done to correct her defect. The doctors have explained to us that her type of "repair" has only been done for the last 6 to 7 years, and therefore, they cannot give us a clear picture of what her lifetime may bring. They believe her repair should take her through a happy and healthy lifetime. Knowing what a strong and tenacious little girl she is, we wholeheartedly believe that she will outlive us all. We look forward to watching her grow and say thanks everyday that God has given us our beautiful, strong little girl!

— Story was written by her mom