Pediatric Heart Expert Forum
Daughter newly diagnosed-in shock!
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Questions in this forum are answered by pediatric cardiologists, cardiothoracic surgeons and anesthesiologists from The Children's Hospital of Philadelphia. This forum is for questions and support about pediatric heart problems, symptoms and topics such as heart murmurs, palpitations, fainting, chest pain, congenital heart defects (including management and intervention), fetal cardiology, adult congenital cardiology, arrhythmias and pre-participation athletic screening.

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Daughter newly diagnosed-in shock!

My daugher is 22 months old. We took her in last week for a possible ear infection. She did have an ear infection and we were also directed to make an appointment with a pediatric cardiologist. Forgive me as I'm still new with these terms. She was diagnosed with mild Aortic Valve Stenosis and mild Aortic Insufficiency with Ascending Aorta Dilation.  Right now, since it's mild, we were told to just have her back in 6 months for another check up.  No restrictions.  What are we in for? We were in total shock. We kept telling ourselves it would be nothing.
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It is never easy to hear that your child has a heart problem, even if it is considered to be mild.  Congenital heart disease is very common.  Bicuspid (2 leaflet) aortic valves are likely the most common type of heart abnormality in the general population.  often when they are discovered during childhood, it is because there is some narrowing (stenosis) or leakage (regurgitation) of the valve.  there is a huge spectrum of severity in this condition.  It sounds like your child has mild valve involvement at present.  The dilation of the ascending aorta is also commonly seen with bicuspid aortic valves.  .Regular follow up is usually requested for mild cases to see if they will change as the child grows.  Unfortunately it is hard to predict:  sometimes they change and sometimes they don't.  But usually any change is slow.  With mild disease there are usually no restrictions placesd on young children.  As children reach their teens, there are usually restrictions to high degrees of isometric activities like weight lifting and wrestling.  You will review these issues over time with your child's pediatric cardiologist at each visit.  Good luck.
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Hi fellow heart mom here : )  I sent you a message with some info on some wonderful groups to talk too...you are not alone, most of us were shocked when we found out our babies had congenital heart defects, most of us had never heard of such a thing, there's just not enough awareness out there...YET! : )  *hugs*
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