Our daughter Alethea was born with a heart defect that we did not know about at birth. She was a very quiet baby, and we were concerned about her skin color being dusky. Because I am Asian and my husband is Caucasian, doctors supposed that her dusky skin color was a result of our mixed races.
After our primary care physician returned from vacation, she recommended that we see a pediatric cardiologist who measured her blood oxygen level and informed us that Alethea would need to have an emergency procedure immediately. The procedure was performed at Swedish Medical Center and then we were referred to Seattle Children’s Hospital for corrective surgery.
At six weeks old, we learned that Alethea had a condition called Transposition of the Great Arteries (TAG), a malformation of the heart that disrupts normal blood flow because the two main arteries leaving the heart are reversed. Having a new baby in a family is such a joyous time, but finding out that something is wrong with your baby's heart turns your world upside down.
To correct Alethea’s heart defect, Dr. Gordon Cohen and his team at Seattle Children’s Hospital performed open heart surgery. The fear of death was with us although we had known everything would work out the best for us regardless of the outcome. One night, on my way back to Children's, our pager went off. There must have been something wrong with her, but I was not with her nor could I call the hospital, and it made me feel terrible. It turned out to be a page from a doctor letting us know that Alethea had to undergo an emergency procedure to let her heart to be assisted by a machine called the Ventricle Assist Device (VAD) because it was working too hard. Alethea became the first patient to be assisted by this machine at Children’s.
TAG is one of the more common heart defects and can be detected at birth by something as simple measuring a newborn’s oxygen level. Since Alethea's diagnosis was late, it was even more troublesome because the chances of a less positive outcome were more likely. Experts recommend the surgery around three weeks after birth because after this time the heart begins to weaken due to the defect. These are the reasons why early diagnosis, pediatric heart research and treatment are so important. The American Heart Association (AHA) funds various research efforts, including pediatric heart research that helps to advance diagnosis and treatment so that families like us may find solutions and hope.
Our stay at Children's Hospital was less than a month long and Alethea’s recovery went faster than anticipated. Hard to believe but today Alethea is already 7 years old! She is a very good student at school. She is a very active, curious and goofy girl. She loves to ride her bike and skateboard, enjoys drawing and other art activities, and playing on the monkey bars. One of her dreams is to become a cardiologist like Dr. Cohen, and to work with him to help children like her.