Our family ’s journey of the heart

When our son Nicholas was 5 weeks old, we brought him and his twin sister Emmy to our pediatrician for what we thought was a routine well visit. Though the twins had been born four weeks early, Nicholas had only been in the neonatal intensive care unit (NICU) for a few days with low blood sugar and jaundice. Both babies seemed healthy and we had no major concerns. However, as we watched our pediatrician listen to Nicholas’ heart and pulse, we realized something wasn’t right. He told us the pulse in Nicholas’ lower extremities was weaker than the pulse in his upper body. He suspected Nicholas might have coarctation of the aorta and referred us to our local heart center, where they confirmed the diagnosis and immediately scheduled us for surgery at Boston Children’s Hospital. On our Vector blog: Can we improve neurodevelopmental outcomes in children with congenital heart disease? We were in shock as we coordinated care for our daughter while packing for Nicholas. He had only been home for a few weeks and now he was going back to the hospital, this time for surgery. As we were going through the motions of echocardiograms and x-rays, we were feeling incredibly scared and hopeless. It was as though our hearts needed repairing too — they were broken for our son and what he had to bravely face, and as parents there was nothing we could do about it. Nicolas and his dad Rob, after surgery When we met with his cardiac surgeon at Boston Children’s, Dr. ...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories autism spectrum disorder Cardiac Neurodevelopmental Program coarctation of the aorta Dr. Anjali Sadhwani Dr. Caitlin Rollins Dr. Christopher Baird Dr. Samantha Butler Source Type: news