Claire was born on December 29, 2001, 4 days past due. Yes, a Christmas baby! Delivery was as expected - APGAR scores high - a beautiful, healthy baby girl at 7 pounds 13 ounces and 20 inches long. Her father and I were on top of the world with our new blessing.
Later that evening, I noticed Claire was not eating. She was sleeping peacefully, but she was not hungry. I addressed this issue with the nursing staff. The next morning, my telephone rang and life as I knew it changed forever. They detected a heart murmur and we were to meet with the pediatric cardiologist that morning.
The news was devastating. Her left ventricle did not develop and she had a serious heart defect. Her defect was life-threatening. We were given our options as follows: heart transplantation, three surgeries to repair the defect, or let her pass away. After thorough research and prayers, the decision was very clear - surgery.
We met with the surgeon, Dr. Michel Ilbawi, on New Years Eve at Lutheran General Hospital where Claire was born. He exuded confidence and little did we know what an extraordinary pediatric heart surgeon he was - world renowned, and he was right in our backyard.
Claire's journey began on January 2, 2002, where Dr. Ilbawi and his staff performed the Norwood procedure at Hope Children's Hospital in Oak Lawn, Illinois. Claire behaved according to textbook and was released 17 days later, with an NG tube, of course, to help her grow stronger for her next surgery, which would need to be performed when she was 4 to 6 months of age.
May 23, 2002, was the next hurdle. The bi-directional Glenn procedure was performed by Dr. Ilbawi and his team once again. This time we were out in 5 days! Again, Claire acted appropriately and read the rules on how to recover from this surgery.
November 20, 2003, was the scheduled date for the last surgery, the extra cardiac Fontan procedure. We got through this date without getting sick and I was 6 months pregnant. We were told this was a fussy surgery because of the fluid restriction and, of course, the age of 2 speaks for itself. Claire once again amazed all of us and was released 7 days later, on Thanksgiving Day. A whole new meaning to Thanksgiving was experienced in 2003!
Claire is now 3½ years of age and sees her cardiologist every 6 months. She does a routine 24-hour Holter monitor annually for precautionary reasons and takes her medication daily like a champ. She is in pre-school, swimming, and ballet. She is an extremely bright girl full of energy and as normal as they come. I feel the same now as I did when she was born - beautiful, healthy baby girl.
We have every confidence Claire will grow up to be a student, wife, mother, and grandmother. She already is a hero.
— Claire's story was written by her mom and dad