Tobias, born 2016
Tobias was always very active and busy. Starting at 2 months he was underweight. But since he always ate well and acted normal, no one worried. At 4 months they did some blood work to check his kidney function but it came back normal. That is when we moved from Michigan to California on military orders. At my son's 6 month well baby check his new pediatrician heard a murmur.
It was the first time anything other than his lack of weight gain was able to be seen. We were sent to Benioff Children's Hospital in San Francisco. The doctor had called and they were expecting us. We were admitted around 1am after many tests in the ER. After all the imaging they could do no one was really sure what was going on except that his mitral valve required some type of surgery and soon. The head of the pediatric cardiology department, Dr Brook, took us onto his patient loaf. We were assigned to the head of the cardiac surgery department, Dr Reddy, for our surgery and had to wait for 3.5 weeks before the surgery was set for about 4 days later. On March 15th Tobias had his surgery. No one was really sure what would happen or what they would see when they opened his heart. Tobias ended up having a better outcome than anyone thought was possible. The issue was not the valve itself, but the fact that extra balls of tissue were clogging it up. No one had seen anything like it before. But the surgeon removed as much of the tissue as he thought safe and necessary. He also repaired a leak that was found and was ecstatic because for the foreseeable future.
Tobias needs no more surgery. Now, at 1 year old, Tobias is doing wonderfully. He has gained close to 10lbs in 5 months. He needs quarterly to biannual check ups with a cardiologist. But as long as his heart grows the way it should, everything should remain normal and hopefully Tobias will need no other surgeries. Moving forward, he just started walking the day before his first birthday and he will be a big brother in November.
Story by Tobias’ mom, Jamie - Virginia