Janey, born 2004
Janey was born on November 16, 2004. Twenty fours after her birth, we were told that she had a heart defect called Tetralogy of Fallot, Pulmonary Atresia, and Ventricular Septal Defect. This was quite a shock to us. She was sent to Boston Children's Hospital when she was two days old and had a heart catheterization. She was released a week later and the plan was to get her bigger and stronger for her first surgery which was planned for when she was around two months of age.
Of course, that had to be postponed when Janey developed RSV and had to be hospitalized for a week. When she was two and half months old, Janey had her first surgery. They placed a homograft conduit and coiled two of her collateral arteries. She recovered pretty well but stopped eating for about three weeks. Once we got home though, she began eating again.
In April 2005, Janey had another catheterization and they attempted to dilate and stent some of her left collateral arteries since it appeared that her left pulmonary arteries were not supplying any blood flow to her left lung. Two months later, another catheterization showed that the dilation was not successful.
In August 2005, Janey had her second surgery to create left pulmonary arteries. They put in a homograft conduit connecting some of her left collateral arteries to her LPA and they also put in a BT shunt. Janey suffered a collapsed lung after the surgery and had to be put back on the ventilator for a day. She came home after one week. She had a catheterization one week later and it showed that the collaterals were supplying blood to the left lung.
In the near future, she will have to have another cath and surgery to replace the conduit and to attempt to tie in some of these collaterals. She will require another surgery after this to close her VSD but we do not know what time frame they are looking at to do these.
Day to day, you would never know that Janey has any problems. She is a very pleasant, happy baby who rolls around the house and loves playing with her older brother and sister. She eats well, although she is on the small side, but is growing at her own rate. Our Janey is a little champ and a true joy.
Story by Janey's mom, Kristin - Rhode Island