Aortic Stenosis

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

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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

2 Comments

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Kim - posted on 06/29/2010

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Hey Aimee,
Yea overwhelmed is an understatement...*smile* Its as though you just go numb ya know? I mean I've dealt with heartproblems being in our family so I'm a lil knowledgeable when it comes to issues but with a diagnosis like that on a small child you just feel helpless and the unknown just drives you crazy. My oldest son was diagnosed with tethered cord (a form of closed spina bifida) over 2 years ago and had to undergo spine surgery. So I'm ok with surgery but he was diagnosed, I read up on the condition, knew what the surgery would consist of and was prepared for the months to come afterwards. With this aortic stenosis I'm not so sure as to what the future holds because I'm not even exactly sure which one he has, is his stable, will it get worse, will he have to have surgery, I mean I'm at a loss for words. And as a mother all I want to do is be able to make the "Boo Boo" go away and I can not. I'm so unsure of alot of things and with that not being my nature its very hard.
I want to thank you for your response. It is nice to hear the positive side of this condition. You have beautiful children and I will continue to keep you and your family in my thoughts and prayers. Have a wonderful day!
Thanks again,
Kim

Aimee - posted on 06/28/2010

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Hi Kim. How are you? I know how overwhelmed and scared you must feel. My son also has aortic stenosis. His was diagnosed when he was just 1 day old,. and it was critical. I know that your son was not diagnosed until years late, and unfortunetly I haven't met anyone yet in the same situation. I would still like to offer my support, or answer any questions you may have. My son had a balloon valvoplasty done at 8 days old, and now has moderate stenosis. He is checked every 4 months to see if it becomes critical again which will be once a year once he is older. If it does worsen again he will need another balloon and if that does not help he will need a valve replacement. We have a wonderful Cardiologist, and hospital that we work with which helps us feel better about his condition. I am sure that with proper check ups your son will do just fine in life.

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