Ewan, born 2004Ewan is a Scottish name and it means warrior. Our baby boy was diagnosed in utero during routine ultrasound with atresia. To say we were stunned doesn't begin to touch the depth of our fear and sorrow.
We were told that our baby would need a series of three open heart surgeries to survive, the first occurring right after birth. The fear we felt for our innocent, unborn child was overwhelming. How could we put such a small child through such pain and suffering? How would we, as a family, deal with the unknowns of an "ill" child? Would this baby boy be able to play with his big sister like any other child? Would he climb a tree? Ride a bike? Go to school? The questions far outnumbered the answers we had at the time. Neither my husband nor I knew anyone with a congenital heart defect in their family. It was a frightening time for us both.
Ewan was born January 7, 2004. He had his first open heart surgery on January 13th at 6 days of age performed by Dr. John Mayer. He had a second emergency surgery 36 hours later to remove blood clots and to make adjustments to the tiny bands places in his heart. He was discharged from Boston Children's Hospital on February 2nd, the day after the Superbowl. He came home on several medications and with a feeding tube, but he was home. Ewan shows us with his fighting spirit that he is living up to his name.
His second surgery took place July 8th when he was 6 months old. He was discharged just 6 days after surgery. Everything went very well. Ewan the warrior is again victorious.
Ewan's third surgery, the Fontan, was October 27, 2006. Again, Dr. Mayer is his surgeon. Ewan again amazed us with his rapid recovery, spending only 48 hours in the Cardiac ICU before being moved to "the floor". To our amazement, Ewan was discharged just 8 days after surgery, and came home only 3 medications. His follow up appointments have all been positive, showing no changes, and Ewan is now on a twice-annual schedule for visits.
For the first time, we feel that we can breath. The 3 big surgeries that filled us with anxiety and fear are behind us. From this point forward, we look to the future. Ewan has started preschool and loves it. We fill his days with activities and fun. From gymnastics and t-ball, to skiing and art, Ewan loves to try everything. He is a funny and energetic boy, full of love for his family and friends, and we are so blessed to be his parents.
While the medical future for children like Ewan is unknown, we have hope that his life will be long and fulfilling. And that is a world of difference from that terrible day in 2003 when we were given our baby's diagnosis. We are forever indebted to the medical miracle workers at Children's Hospital, especially surgeon Dr. Mayer, who gave us our son's future.
Story by Ewan's mother, Ruth - Massachusetts
Hunter, born 2006
Bill, born 1965