Alyson, in 2001

Alyson was born with Tetralogy of Fallot, an absent pulmonary valve and left pulmonary atresia. She was life-flighted from out community hospital to a larger hospital on her second day of life after a "tet spell" dropped her sats into the 40's. She spent 12 more days in the hospital until she was able to come home where she did well until she was hospitalized with RSV/bronchiolitis at 3 months. Aly spent a week in the hospital and never recovered her sats. She had her first catheterization at 5 months old. During the cath they discovered that her left pulmonary artery was discontinuous and was really her ductus. It was very small and had barely any blood flow. Aly had 2 more diagnostic caths before her first surgery at 8 months old.

Aly's first surgery was a modified BT shunt, right pulmonary cut down, and main pulmonary artery banding. She did well with only a couple of problems (post-pericardotomy syndrome and a collapsed lung) and was home in 3 weeks. Since Aly was born without a pulmonary valve and no left pulmonary artery the majority of her blood flow went to her right side. This caused her right pulmonary artery to grow enormous and it started to crush her airway. This caused endless wheezing and many trips to the hospital for breathing difficulties.

Her second surgery was at 17 months old and was supposed to be a "complete" repair (closure of her large VSD). However, after another cath her surgeon suggested we fix her left pulmonary artery first and come back for her VSD closure. During her second surgery her left pulmonary artery was made confluent with a 12mm Gore-Tex graft and her banding was tightened. Aly did very well for this surgery and we were home in 7 days. However, after we came home, she had a terrible time eating and dropped down to a scary 16 lbs. She was taking more meds than she was food. Her third surgery was when she was 22 months old and was by far the hardest for her. They connected her pulmonary arteries to a main pulmonary conduit and added a homograft valve. Her VSD was also closed. She had a scary 2 weeks in the CICU, with some liver failure and trouble coming off the ventilator. Finally she came home after 6 weeks.

After her third repair, we had a reprieve from her heart troubles. Instead we dealt with her respiratory issues and "asthma". When she was 4, her pulmonologist suggested Aly have an MRI to asses her airways. During the MRI it was discovered that her right pulmonary artery had grown so big that it was cutting off her right main bronchus causing her right lung to collapse intermittently and she needed surgery to correct it. For Aly's fourth surgery they cut down her right pulmonary artery and changed her homograft valve and conduit. She did very well and was home in 7 days.

Aly is now 8 years old and doing very well. She is a fearless yellow belt in Karate and is thriving in second grade. She has a little trouble keeping up with her classmates but is curtailing her activity to things she knows she does well, like Karate. We anticipate further intervention with her left side as well as a valve and conduit change in the future.