Our son, Owen D’Arcy Shumway, was diagnosed with Tetralogy of Fallot at 23 weeks gestation. Ruby had traveled to Anchorage for what we expected to be a routine scan with a perinatologist due to her type 1 diabetes. The diagnosis that came during that visit very quickly changed our lives. Ruby spent the summer making bi-weekly trips to Anchorage to see the perinatologist, pediatric cardiologist, and OB. In late August, Ruby went into preterm labor here in Petersburg. She was medevaced to Providence Alaska Medical Center, and Tim and Fitz followed shortly thereafter. Things were stabilized and Ruby was discharged, but given strict instructions to remain in Anchorage for close monitoring until the delivery, so the entire family remained. 

Owen was born on October 9, and spent the first 5 days of his life in the NICU. The cardiologist was optimistic regarding Owen’s prognosis, and two weeks later we were able to bring Owen home to Petersburg to wait for his surgery. Things went well, initially. Owen gained weight with a diet of fortified breastmilk, However, at Christmas things took a turn. Owen had a series of “Tet Spells” - periods of low blood oxygen saturation that occured after feeding or crying. Following some intense hospital visits in Petersburg, Ruby took Owen back to the cardiologist in Anchorage to follow up. It was determined that he needed the corrective surgery as soon arrangements could be made. With Owen’s condition deteriorating each day, supplemental oxygen and beta-blocker medications gave us just enough time to get to Randall Children’s Hospital in Portland, OR for his surgery. 

His surgery was performed on January 15th, and it was a great success. After 5 days in the hospital, we brought Owen back to Petersburg again, where he has been thriving ever since. His one-month and six-month post-op echos went well, and he will now see the cardiologist yearly for monitoring. He will need a pulmonary valve replacement in the future, but we are hopeful that it won’t be necessary until he is 10. 

Owen is now an active, exuberant toddler. The challenges of the last two years make life with him even sweeter. Just like his heart buddy Jax, he is the strongest, sweetest, happiest little guy. We can’t wait to watch these two take on the world.