Aortic Stenosis

Kim - posted on 06/28/2010 ( 2 moms have responded )

Hello Everyone,
From the prior posts I have read my story is a lil bit different. My 4 yr old son was just diagnosed with aortic stenosis this past Friday 25th. The doctors said usually this is something most children are born having.
To tell a short version of how this all came about I shall start by saying it all started last summer. My son who at that time had just turned 3 complained of his chest hurting. I at that time looked at it as being anything for instance: a belly ache, a mosquito bite, maybe he had fell down at daycare, was running to hard just out of breath but as most parents do I discussed this issue with the pediatrician. At that time is when they found a heart murmur. The pediatrician asked if I knew he had a heart murmur I stated no. He then said it was nothing to worry about it sounded fine and not to be alarmed. I can say I was not that upset about it because I, along with many other family members, have lived with functional heart murmurs with no problems to ever arise. The pediatrician said we will check him again next year and go from there.
So this brings me to this year. Upon arriving at the doctors office last Wednesday the 23rd the pediatrician listened to his heart murmur and was quickly alarmed. He stated the sound of his murmur had changed and he would have to be set up for some cardiac tests. So of course by this time I've heard no diagnosis yet I'm already in tears. They continued to finish my sons yearly exam then asked if he had complained of any chest pains again which I told them yes. I had documented them down and was an estimate of about 4 to 5 times a month. They then scheduled his appointment for Friday and we left. When Friday arrives I was like many of you I'm sure just a basket of nerves. Once all the tests were completed the cardiologist explained to me the news. He stated my son had aortic stenosis and immediately my eyes are scanning the room begging for this big bright light to appear that would explain to me what that meant. The cardiologist then said there are three kinds which are mild, moderate and severe. He said your son at this moment from what we see has mild aortic stenosis. I said ok, at this moment?? explain please. He said, with your sons murmur just being caught last year, and him not being born with aortic stenosis we can not be sure that his is stable at just mild. He could develop into moderate or severe. Although he may just remain at mild which one thing you have to watch for is infections. I at this moment was completely overloaded with information and unable to register everything he was saying. He said we want to see him back in one year unless he develops more symptoms at which time we will see him immediately.
So after telling you all my story I was curious if any of you know of anyone that their child has been diagnosed with aortic stenosis years after birth??? I've read up on aortic stenosis so much since Friday I feel like I'm drowning in information with no real answer. Thank you for taking the time to read this and I hope I hear back from someone.
Love to All.........
Kim