Aoife Molly, born 2006

Our little girl, Aoife Molly (pronounced Eee-fa), was born on February 26, 2006. I had a normal pregnancy, and Aoife seemed just fine when she was born. Her color was good and she seemed healthy. The only thing that surprised us about Aoife was how much she slept. It seemed like she was always sleeping - we barely saw her eyes open. We had no idea that anything was wrong, we thought that we were just lucky to have a newborn who liked to sleep. At Aoife's one week visit, however, the pediatrician heard a heart murmur and recommended that we take Aoife to a pediatric cardiologist.

 

We made an appointment even though we didn't think anything was seriously wrong. However, when we visited the PC on March 7th, we learned that she had a serious and complex heart defected called Truncus Arteriosus. She needed to have open heart surgery within a few weeks in order to live. We were devastated. My husband and I knew nothing about congenital heart defects and we felt like this was the end of our world. The PC reassured us that there was a very high probability that the surgery would be successful, and that although she would have an indefinite number of surgeries, Aoife would grow up normally. In my mind, though, I was expecting the worst.

 

The week between Aoife's diagnosis and her surgery was a nightmare for our family. It seems like a blur now, but all of the waiting we had to do was horrible; waiting for the doctor to call, waiting for the hospital to call to us know when the surgery would be scheduled, and all the while watching Aoife and trying not to think about how unbearable it would be to lose her. During that week we watched Aoife get sleepier and sleepier until we finally had to start waking her after five hours of sleeping so that she could feed. Aoife had been putting on weight and now her skin was starting to sag because she was losing the weight she had gained. Watching Aoife start to go downhill throughout that week before her surgery was more frightening and difficult than anything. Finally, though, we heard from Boston Children's Hospital that Aoife's surgery would be on March 14th.

 

Aoife's surgery went well. The surgery consisted of patching a large hole in her heart, separating the aorta and the pulmonary artery, and putting in a conduit to extend the pulmonary artery. Although she lost a lot of blood and had a rough time immediately after surgery, Aoife recovered well. Once her heart problem was fixed, she was no longer a sleepy baby. In fact, she seemed to be making up for lost time and was very hungry and alert! Aoife will need several surgeries throughout her childhood years since her conduit will not grow with her and will need to be replaced as she grows.

 

2010 Update:

Aofie continues to do well. She is closely monitored by her PC and she has not yet needed to have open heart surgery to replace her artificial conduit. She has had two cardiac catheterizations during which the doctors were able to dilate her conduit. Aoife is truly a joy, and is a kind and compassionate child. She is vibrant and friendly, and her preschool teacher says that Aoife "lights up the room". If you did not see her scar, you would never guess that she has a complex congenital heart defect. Although it is worrisome to us when we think about Aoife's future open heart surgeries, her prognosis is good and we are so thankful for the gift of our sparkling little girl.

 

Story written by Aoife's mom, Heidi - Rhode Island