Rowan S.

Birth Date: June 16, 2014

Diagnosis: Shones Complex
Rowan's Story

Rowan has always rocked to his own beat. Diagnosed prenatally with Shones Complex, his first open heart surgery at 4 days old wasn't actually decided until he was in the operating room. It could have been fairly simple or more complex depending on what they found. Being Rowan it was complex and he started down a single ventricle path with the Norwood procedure. Soon after he came home, Rowan stopped eating and was readmitted to the hospital for 4 months with a feeding tube waiting for his second heart surgery, the Glenn. He had a gastric tube placed and we came home.

The next 3 years were relatively uneventful. Rowan would have a couple of admissions a year, when virus's and infections would overwhelm his system, but in that time we managed to get him eating by mouth and had his feeding tube removed. By 3 he was caught up developmentally and graduated from speech, occupational and physical therapy. However good it was, we always knew there was a cloud hanging over our heads because Rowan would need another open heart surgery around the age of 4.

Just before his 4th birthday we started noticing symptoms of fatigue, cyanosis and general discomfort. His cardiologist felt the time for his third planned surgery, the Fontan, was coming soon. A exploratory heart catherization was scheduled. By the time we got to that procedure, Rowan had been admitted to the hospital and we were hearing the words heart failure for the first time. His cath looked good, and we thought he was still a surgical candidate. The team wanted to do an MRI before the operation. Rowan decided to dance to his own beat again, and our path changed forever on that day. The MRI revealed info we hadn't had before. That info decisively made the decision that he wasn't a candidate for any surgery with his current heart function.  

Rowan was listed for a heart transplant in August. As of today, January 8th, he is still waiting for his perfect heart. He is currently waiting at home on a continuous IV infusion to help his heart pump. He is home bound. The risk of illness is too high to expose him to other children. 

"Thank you for the beautiful cross-stitched quilt. Rowan loves it."