When Benji was born there was no idea in our head that there would be anything wrong. His apgar scores were good and he was a good size, although he was easily the smallest of my four. Mommy intuition kicked in though, I knew something was wrong. My other three babies had been tanned and Benji had a bluish appearance to me. (The nurses said he was normal color, except for his feet) He didn't want to nurse though and that kept my concern for him high.
It was the next morning that we knew something was definitely wrong. Benji had not nursed at all and didn't take a bottle either. When the resident pediatrician checked him out he heard an "odd" murmur. In light of the not nursing and the murmur, a pediatric cardiologist was called in to check on him. That's when our world was turned upside down.
After hours of waiting and trying to take in what could possibly be wrong, we got the news. Benji had CoArctation of the Aorta and a Bicuspid Aortic Valve with a thickening of the wall (stenosis). The doctor immediately put him on medication to keep the ductus arteriosus open, or patent. Before we could even really take in what was going on, Benji was on his way to the Children's Hospital and into the NICU.
There were many terrifying hours over the next seven days. When Benji was a week old he had what they call closed heart surgery. They were able to repair the coarctation, or the narrowing, of the aorta by using the subclavian artery. At that point, it was decided to leave the valve alone. His recovery from the surgery was excellent, he went home five days after.
We were told that Benji would most likely have to have another procedure by the time he was two. This has not been the case. While Benji does still have the bicuspid valve and we do have to keep close tabs on him, he has thrived and exceeded expectations. Benji will be six on March 2, and is on no medication for his heart.
In relating Benji's story, we know that we are one of the lucky ones. We have shared the sadness of others that were not as fortunate. This is why we feel that we have no choice but to bring attention to Congenital Heart Defects.
We praise God for Benji's health and we pray that with more attention, there will be more survivors.
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