James’ Story told by his mother:
On July 12, 2023, I went into labor of 36.5 weeks with James. He arrived happy, healthy, and hungry that evening. Everything checked out as normal and we went home a few days later. At his primary care doctor appointment his heart rate was high, so we were referred to a cardiologist just to check on things. Two days later we went to the cardiologist, and everything checked out after receiving an EKG. James started acting more lethargic, mostly sleeping and had poor circulation (purple appearance) to his hands and feet. On July 22 at 10 days old James stopped wanting to eat and felt cold to the touch. My husband and I decided to take James to the ER. Upon admission to the ER, the medical team was having difficulty getting BP and O2 readings. It wasn’t until the NICU staff arrived that we started to get some readings on James, which were indicating something was very wrong. Very soon after, James coded. He was having a heart attack. He was given CPR for 7 minutes. The team was able to get James stabilized on life support. We were then transferred to the NICU at a children’s hospital. James proceeded to code 2 more times. At that point he was transferred to the pediatric cardiothoracic ICU (CTICU). He was incredibly sick. His heart was struggling, but his amazing intensive medical team kept him stable. At this point we were looking for answers. Why was this happening? After multiple blood tests, genetic testing and infectious disease testing doctors suspected myocarditis. James tested positive for coxsackie virus. Tests also confirmed his heart was weakened from the trauma. We could not confirm until the doctors got a clearer view of his heart with an MRI, but he needed to be healthier. After a couple weeks we were able to confirm the root cause of James’ heart attack – viral myocarditis. James had a long journey ahead of him. His heart had to heal, he had to learn to breathe on his own again and then he had to learn how to be a baby again (think drinking from a bottle). James had an arterial line and central line. At one point he started showing signs of infection and ultimately was diagnosed with sepsis which led to a blood clot in his Brachial artery. Because of this, blood flow was restricted and he almost needed to get his index finger amputated. But James stayed strong with the support of his medical team and family. At 1 day shy of a month, James was healthy enough, breathing on his own with a stable heart, that he was able to come home. James had tons of doctor appointments with his primary care, cardiology, physical and occupational therapy team. We are pleased to say that James’ heart is functioning normally now! We recently were able to stop all heart supporting medications. He has also been assessed for all developmental milestones that might indicate brain damage and we are happy to report that he is tracking normally and ahead for his age. James is now a happy and healthy 9-month-old boy. We are beyond grateful for his survival and positive outcomes after such a traumatic incident. James is a myocarditis survivor!
