Our son Levi was diagnosed in utero at 16 weeks with Dextrocardia. We found out at birth he not only had Dextrocardia, but also Transposition of the Great Arteries (d-TGA), a couple Ventricular Septal Defects (VSDs), Superior-Inferior Ventricles, and Pulmonary Stenosis.
Levi and his identical mono-mono (Monochorionic-Monoamniotic) twin brother Lane were both born at University of Cincinnati Medical Center 7 weeks and 2 days early. Levi weighing 3 pounds and Lane weighing 4 pounds. Levi was emergently transferred via ambulance to Cincinnati Children’s Hospital. Levi was too small but luckily stable enough that they waited to do his first surgery.
August 19th, when he was just under 3 months old Levi had his first open-heart surgery. He had a BT shunt placed and pulmonary artery reconstruction. Levi spent a total of 102 days inpatient at Children’s between the CICU and the step-down units. He was finally able to spend time at home from the beginning of September until the end of December. His first catheterization was December 29th to get a better look at his heart for his second, much more complex surgery that he would be having. On January 24th, Levi urgently had his second open-heart surgery. He successfully had a bi-ventricular repair, they were able to patch his smaller VSDs, they put in a conduit in his larger VSD, and placed a contegra conduit (made out of cow - how cool!) for the reconstruction of his blood outflow. He spent a total of 24 days inpatient. His next surgery hopefully won’t be for 3-4 more years. Levi is currently 17 months old and is doing amazing! He was able to be taken off home oxygen after his second open-heart surgery! He had his G-J feeding tube surgically placed in April and that is much better for him than his ND tube was now that he’s very active.
Unfortunately, we found out a few days before their first birthday after an Emergency Department visit that Levi’s twin Lane, has an idiopathic 2:1 heart block. He is now closely monitored at home on his pulse-oximeter but he also sees the electrophysiologist and the cardiologist. If his heart rate gets any slower than it is or if he begins showing symptoms, he will have to have a pacemaker put in. We are hoping that never happens.
I have also been walking for my cousin Ella who was born with TOF 21 years ago.
We are so grateful for each and every one of you who have joined us last year and/or donated to the team. We also can't thank the Heart Mini enough for raising funds every year for CHD Research! ♥
