At around 1.5 months of age, she had on and off incidents of rapid breathing which I attributed to normal infant breathing pattern. One night, however, she turned absolutely pale for no reason at all. Her pallor was, literally, as white as a sheet, as if all the blood drained away from her. It was very frightening and we quickly rushed her to the hospital. The doctors detected a heart murmur and ordered a 2D echocardiogram. What they found was a rare and complex heart defect accounting for less than 0.5% of congenital heart anomalies. She also had an extra electrical pathway in her heart, causing her to have an irregular heart rate. It was this that caused the symptoms that we observed – extreme pallor and general weakness.

   Because her heart defect is not cyanotic (i.e. she is not blue), we had time to research about her heart condition and the options available to us. Soon it became clear that surgery will be needed because, otherwise, her heart may weaken and start to fail as she grows older. The surgery needed is performed by very few centers even in the U.S., and certainly not in our home country. I could not even begin to describe how harrowing those early days were. We knew so little about her condition, we did not know where to start. I jumped every time the phone rang at work, frightened that she had another tachycardia episode. To add to the stress, we knew we would be hard pressed to come up with the funds needed for a U.S. surgery, along with its attendant cost.

   I will forever be grateful to all the people who helped us during those early days. Little by little, we learned more about her condition and we were able to manage it with a semblance of normal family life. This year will be another watershed year, as Gerri is facing at least one cardiac surgery. Her second stage surgery may follow also within the year, or early next year. Our family is very grateful to both First Hand Foundation and Jesica’s Hope Chest for helping us with the financial requirements of Gerri’s surgery and travel cost. It has removed much of the financial burden and allowed us to concentrate on Gerri’s health and well being. To the directors and supporters of JHC, thank you very much!

Lalaine, mom to Gerri