Ryan B.'s Story: Parent's Letter Project Taussig-Bing anomaly- Ryan’s dad

Dear parent of a child born with a Taussig-Bing anomaly,

Shortly before Thanksgiving 2005, our son, 10-week-old Ryan, visited an outpatient pediatric cardiologist for examination of a heart murmur. Following a lengthy exam, the doctor sat down with us, quickly turning to a side table to draw two diagrams. On one sheet was the label "Ryan's heart" and on another sheet was the label "normal heart." It was then we learned Ryan had a rare combination of heart defects that together were known as a Taussig-Bing anomaly.

On November 21, he underwent open heart bypass surgery by Richard Jonas, MD, and his surgical team. About five hours after we had seen Ryan that morning, his walnut-sized heart had been reconstructed with hundreds of tiny stitches. Arteries had been grafted, and a small patch of Dacron was sewn into the wall of his heart to close his ventricular septal defect (VSD).

My wife and I stayed with him in shifts, with his grandparents keeping him occupied on days when we were too tired to stay awake in the Cardiac ICU (CICU).

Eventually he was finally taken off the ventilator and allowed to breathe on his own, following two very frustrating, unsuccessful attempts, only to catch pneumonia a day later.

Again he recovered, and on December 15, 2005 Ryan was released from the hospital. On that same day he and his mom got to see home for the first time in exactly one month. Ryan's life had been saved by an amazing team of doctors and nurses.

Today, Ryan continues to exhibit a heart murmur from a mild leaky aortic valve, but otherwise he has grown and developed wonderfully. We will always be grateful to Dr. Jonas and the staff at the Children's National Heart Institute.


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