At my 18-week ultrasound for my son Ryker, I had an idea something was wrong when the Ultrasound tech continued to look at the baby’s heart instead of proceeding with ultrasound like normal. They couldn’t tell what exactly it was, but we knew something was wrong with his heart.
My doctor sent me to the perinatology department at OHSU, who confirmed that Ryker had dextracardia, a condition where his heart is located on the right side of his body instead of the left. He also had congenitally corrected transposition of the great arteries, which meant that his primary arteries of the heart are transposed, as well as the left and right ventricles of the heart. Basically his heart is completely flip-flopped. Left uncorrected, the result could be heart failure, as there is too much blood pressure going to his lungs. The right side of his heart is also at risk for wearing out and becoming enlarged due to the increased workload of pumping to the body.
Cathy Cromett ended up being our saving grace. She worked with a combination of different departments: my normal obstetrician and a perinatologist in Medford, where we live, and then the perinatology office and cardiology department at OHSU. All the appointments happened in one day; that worked out so well. She got everything coordinated, showed me where I needed to go and urged me to call her with any issue at all. It took away so much stress.
The pregnancy itself was fine; I was told to take it easy, but I didn’t need to go on bed rest. Ryker did fabulous when he was born. We were expecting a stay of 4-21 days but after being monitored in the Doernbecher NICU for a couple days he was discharged home with me. We’ve been managing his condition with medicine, but at two months now, he’s going to have surgery at OHSU Doernbecher to begin the process of correcting his condition. When Ryker is around 12-18 months they will do a ‘Double-Switch’ procedure in which they will swap all the vessels around to correct the flow pattern of the blood coming and going from the heart.
I never questioned the care at OHSU and Doernbcher. The doctors are good at explaining things at the patient level and are very thorough. We never felt like we couldn’t ask questions.