Care4Conway: Important Meeting

Friday, April 8, 2011

Important Meeting

Conway with the daughter and widow of Dr. Giancarlo Rastelli at St. Louis Children's Hospital 4/6/11

Conway doesn't realize it now, of course, but someday he'll be able to look back at this picture and hear stories about the time that he met Dr. Antonella Rastelli. He's been introduced to far too many doctors in his short life but this one was different. She didn't examine him, poke or prod him. She held him and talked to him and told his mommy all about her father, Dr. Giancarlo Rastelli. You see, her father is a big reason why Conway is alive today and why he's got a great chance at keeping his special heart going strong for the next 75 years. Dr. Gian Rastelli was the heart surgeon whose pioneering work led to the surgical procedure he developed using a conduit to connect the RV and the PA in transposition cases involving pulmonary stenosis (The Rastelli Procedure). The version of the double switch Conway had done in 2007 was called the Rastelli-Senning. Here's a little bit about the life of the great doctor. We were so blessed to be able to hear her speak about him and the kind of man he was. Usually these types of physicians are "untouchables" but he was different. She shared many excerpts from his own letters back to his family in Italy that he wrote during his years conducting research and surgery at the Mayo Clinic. It was fascinating to hear how passionate he was for his work, and how dedicated he was even after a life changing diagnosis of his own. To think of the sacrifices those women made so that he could develop that procedure... it's just mind-boggling!

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Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. 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, he underwent open heart surgery to reroute the bloodflow 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 with VSD closure and sub pulmonic resection. 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 eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he 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. He 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 he 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 were felt to be the cause of his heart failure. On 8/24/09 he 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 called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.