Conway (2009)

2008

Conway David was born on March 3, 2007. He is the youngest of three and the only boy. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub-pulmonic stenosis and Ebstein’s Anomaly.

Just before turning six months of age, Conway underwent open heart surgery to reroute the blood flow in his heart. Called the "Double Switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker.

Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for 8 months. He also lost muscle tone and required physical and occupational therapies.

In April 2008, Conway had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid .

Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically Atrial Flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. Conway went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone.

On 7/22/09 Conway had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and are felt to be the cause of his heart failure.

On 8/24/09 Conway had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve using a ring at the University of Michigan (Ann Arbor). This time he was discharged just six days later!

Conway's first follow-up cardiology visit shows marked improvement already. We have been so blessed!