We found out that Wes would be born with complex congenital heart disease midway through my pregnancy. The 20 week ultrasound tech thought she saw something odd in the baby’s heart but he was too squirmy for her to know for sure. Two weeks later we had our first fetal echocardiogram. We assumed there had been a mistake and we’d leave the office having confirmed that our son’s heart was fine. But after the echo the doctor began our meeting with, “Let me start with how a normal heart works.” We knew with that statement we weren’t going to be in the normal camp.

Wes has L-Transposition of the Great Arteries with associated ventricular septal defect and pulmonary stenosis. This means that his ventricles are switched, there is a hole between them, and there’s an obstruction at his pulmonary valve. More information on LTGA can be found on a number of sites including the American Heart Association.

We spent the second half of the pregnancy attending many doctor’s appointments, meeting with a surgeon, NICU doctors, etc. The doctors prepared us for the likelihood that Wes would need surgery before he came home from the hospital. In a happy twist, the pediatric cardiologist who examined him after birth told us that he appeared stable and he didn’t expect surgery would be necessary. Although he was still a NICU patient, he stayed stable, ate well, and threw all our preparations to the wind by being discharged only a day after Emily.

Over the past year Wes has remained balanced, which seemed to confound his cardiologist, never needing surgery or medicine. We’ve known for a year and a half that surgery was inevitable but not knowing when it would happen. In August we went to Boston to consult with a cardiologist and surgeon regarding the surgical options. After those meetings we decided to pursue a double switch at Boston Children’s Hospital, a surgery that isn’t performed at Albany Medical Center. Following our January local cardiologist appointment the Boston doctors reviewed Wes’s record again and recommended that we move forward with the surgery.

It’s hard taking our kid to have surgery when on the outside he looks as healthy as possible, as many of you that know Wes have seen. But there have been times over the past weeks when the coloring in his mouth looks a little off, or he starts breathing differently for no apparent reason and we suspect that we’re starting to see some of the symptoms that the doctors have been asking about for over a year. We have enormous confidence in Wes’s team, both locally and in Boston, and so we will do our parenting job – weigh it all and move forward with what we believe to be in our son’s long-term best interest.