The Heart of a Survivor

Ten years ago my life changed profoundly. Not only did I become a first-time mother, but I also became a mother to a child with a congenital heart defect. At 3 weeks old, my daughter Lucy was diagnosed with Tetralogy of Fallot. During her first year of life, Lucy had 10 surgeries.

It was shocking when we were told this perfect, healthy-looking child would need a very complicated corrective surgery. She weighed only six pounds. The brilliant surgeons at Randall Children’s Hospital at Legacy Emanuel worked on the equivalent of a wet spaghetti noodle to attach a crucial link connecting her heart to her left lung.

Eight hours after surgery, Lucy had a cardiac arrest. I had no understanding of what that meant. The word “heart,” a source of emotion, but also a functioning organ that was the size of a walnut, had failed. Dr. Le Gras, her cardiologist, was at her bedside when it happened. He massaged her heart with his hands for a half-hour before it was able to beat on its own. We were told her chances of survival were slim. Her only chance to live was to put her on a machine called ECMO. This machine performs the functions of the heart and lungs. It can destroy your brain and body after four days. Very few babies survive this.

Praying became part of our saving grace. The family held a vigil at the hospital for four days, while time was becoming our enemy. As they tried to take her off ECMO, Lucy did not respond. A plug into an electrical socket could keep her alive or take life from her.

The tragedy brought our family so close. I saw many things that people my age don’t get to see. I saw grown people cry from their heart. I saw a doctor tell us that there was little hope left and open his heart to us. I saw unwavering love from family and friends. I saw a priest give my daughter her last rites. I saw my baby’s heart beating because they had to leave her chest open for several days because of swelling.

Then little miracles started to happen. I saw hope. I saw the pleasure a blinking eye can bring when hopes are high and expectations are low. I saw a baby whose heart was open for the world to see, both physically and emotionally. I saw into the heart of everyone I loved. I believe God answered all of our prayers. Lucy blinked and opened her eyes, her heart started to respond, and they unplugged the machine. Lucy fought, she blinked, her toe wiggled, her heart beat. She was far from fixed but hope was everywhere. Can you will someone to survive? Can all of your hearts work in unison to ask for a miracle? I still do not know, but for Lucy it had worked.

After two months and nine operations Lucy came home. Her cardiologist discharged her with a grave warning to her dad and I that even a common cold could kill her. Operation Quarantine began. My husband Pat took showers and changed his clothes when he got home from work, before seeing Lucy. I went to the grocery store at night and took a shower afterwards, so all outside germs stayed away from Lucy. I had a spreadsheet schedule of feedings and medicine that kept me busy at two-hour intervals 24 hours a day. The next eight months were not easy. Lucy had 52 visits with 11 different specialists. She had to be fed through a tube coming out of her abdominal wall and had to take multiple medications. At age 10 months, she had her definitive repair. From our experience, we expected the worst. But she was home in five days! She has had three surgeries since then, and will need more in the future.

It’s been 10 years now, and surprisingly, all of that is really a distant memory. Constant worry has been reduced to occasional worry. We prefer that Lucy not be defined by her heart defect, but it has shaped our lives and what we do with our “giving” time. We made a lot of promises to God that we would give back if we could keep her. We are regular volunteers with the American Heart Association and the congenital heart support group at Randall Children’s Hospital at Legacy Emanuel. Lucy is the youngest Ambassador for the American Heart Association. There is nothing we can do to control the anomalies in Lucy’s heart or her surgical future but we follow the AHA guidelines to do what is in our power. Mainly, we make sure our family exercises, eats well and gets plenty of sleep.

Lucy has not only survived. She has thrived. She is a regular fourth-grade girl that is busy with softball, basketball, piano and gymnastics. She shows no signs of any deficits in spite of everything she went through. She’s amazed us with her wit, intelligence and ability to make us happy. I sometimes think of what would have happened had she not made it. What would this have taught me about life? Could it have possibly taught me as much as it has by Lucy surviving?

Category: 2012_February, Health