Our Story

This is the story of our son Roman and his journey with a congential heart defect. At 2 months old, Roman was diagnosed with a congential heart defect called coarctation of the aorta and also bicuspid aortic valve. They are 2 different conditions that can be found apart or they can occur together...he has both conditions. Coarc as I will call it, was the most serious of the 2. It is a fatal condition when left untreated especially to the degree that Roman had it. It means that his aorta was narrowed down to the point of like a pencil in one spot instead of being nice and wide the whole way through. It caused his heart to work extra hard to pump the blood out because it had to push it through such a small opening. Half of his heart became enlarged because of this and his blood pressure was high except in his legs which was so low that they couldn't register it at all in one leg. The aorta delivers blood to the lower part of your body and his lower part of his body had been deprived of enough blood up until it was fixed by surgery. He was diagnosed after being sent to a ped. cardiologist for some tests when his pediatrician heard a murmur that wasn't present at birth and had trouble finding his pulse in his legs at 2 months. We went to Vanderbilt Children's Hospital and they confirmed the diagnosis and then decided to do heart surgery the next day. They took out the narrow part of his aorta and stitched the wide parts back together. He was in the hospital for about a week. Recovery at home was a little longer...couldn't pick him up under his arms and he had meds that had to be adminstered at certain times through the day. He spent one night in the red pod which is critical and then the green pod which is still critical but a little better and then finally got his own room at the hospital. Neal and I stayed with him and never left until he did. We say now that it was the week that time stood still. Nothing mattered anymore. Just our son. We remained very calm and had faith that he would be okay. Lots of people were praying for us and it really gave us a peace that is hard to describe. He still has bicuspid aortic valve disorder and they monitor it yearly at VCH as well as keep an eye on his aorta to make sure the narrowing does not reoccur. We had our checkup there this week and they did a heart ultrasound and an EKG and gave him a very thorough work up. They found that his aorta is getting stronger and his valve isn't leaking like it was at the last visit. It is the best news we could have received. I don't understand why our family has been picked to go through this but I do know that God is in control and it has given us fresh eyes to what is really important in life. Through Roman's journey we were introduced to a wonderful charity, Saving Little Hearts. They brought us a surgery care package while we were in the hospital with him  that was filled with hospital survival necessaties and info on his condition. They even gave us a camera and a journal to record our time there! Saving Little Hearts raises awareness of congenital heart defects and provides surgery care packages to young heart patients at a lot of different hospitals. For more info on them you can google them..they have a website with items available for purchase. Roman has 2 scars that serve as reminders of the miracle of what we went through. If you know him personally, don't mention his scars because he has become self-conscious about them. We are working on fixing that! Thanks for taking the time to read our story. Hope it helps someone!