At my anatomy scan, my OB noticed that our baby's heart didn't quite look right. After visits to a high-risk pregnancy doctor and a pediatric cardiologist, it was confirmed that our baby had a congenital heart defect (CHD), in his case it was a large hole in his heart (a Ventricular Septal Defect or VSD). Our son, Miles, was born in April 2018 and had an echocardiogram within several hours of being born so that the pediatric cardiologist could get a better idea of the size and location of his VSD. It was during this exam that the cardiologist found in addition to his VSD (which suddenly became a less urgent issue), he had coarctation of the aorta (COA) and would have to be transferred to Cincinnati Children's Hospital immediately and then have heart surgery within days.
I insisted on being discharged immediately so that I could go with Miles to Cincinnati Children's. When we arrived at Children's, we were a mess both emotionally and physically. A bag of donated toiletries from the Pediatric Congenital Heart Association of Ohio that was given to us the moment we arrived was a life saver. While we were able to go home to sleep and shower in the following days, not everybody is so lucky as people travel from other states and even countries to be seen by the doctors who treated our son.
Miles had surgery at nine days old and everything is looking good so far. He'll be monitored by a cardiologist for the rest of his life to ensure that he doesn't develop high blood pressure and once he reaches his teenage years, he'll have yearly MRIs to watch for aneurysms, which can be a delayed COA complication. At his second follow-up appointment, we received the news that his VSD closed on its own! We are so thankful it existed and tipped everyone off that there was an issue, but we're also very thankful that it closed.
We are so grateful to PCHA-OH for giving us such a sense of community during this tough and often confusing time. In addition to the toiletry bags that helped us to feel a bit more like ourselves at the hospital, PCHA-OH has built a great online community that has helped us navigate this from the start. Please consider spending some of your charity dollars this year to help families through their own CHD diagnoses.