Stephanie,
First off i want to say how trully sorry i am for your loss. We went
thru quite an ordeal with my sons heart and still i feel blessed
that it was not as bad as it could have been. I thank god every day
that he is doing as well as he is. IT is such a scary thing to have
to go through.

The heart thickening is called Hypertrophic Cardiomyopathy (HCM). It
is basically abnormal thickening of the muscular walls.

I found this on a website about noonans:

"Around 80% of babies born with NS have some sort of heart defect,
although many are asymptomatic and the defect is only discovered
when a `heart murmur is heard. The most common heart defect in NS is
a narrowed pulmonary valve (Pulmonary Stenosis), which may also be
dysplastic (mis-shaped). Often the narrowing is not severe and in
around 90% of cases surgery is not required. Hypertrophic
cardiomyopathy is also fairly common, causing a thickening of the
heart muscle, often with impaired heart function. However most
people with NS who have HCM remain asymptomatic for many years, and
in some cases the HCM will actually improve with time. An Atrial
Septal Defect is an abnormal opening between the two upper chambers
of the heart, resulting in some improper blood flow from the left to
the right side of the heart. Whilst small ASD's may close by
themselves, surgical closure of larger defects is often required...."

When they did open heart surgery on my son they basically removed
part of the muscle thickening. It was after that surgery that the
cardiologist suspected noonans. He said that that type of muscle
thickening is typical of noonans syndrome. We went back several
times after his last open heart to check on the muscle thickening
and make sure it was getting better. I think that is the scariest
part of the noonans.

It can be very severe. For my son it was repairable - when he gets
older he will more than likely have to have his valve replaced with
a prosthetic valve.

I hope this helps - and once again - so sorry for your little one.
Hang in there.

Take Care
Christina


--- In noonan_support@yahoogroups.com, Crocheting Mommy
<crochetingmommy@...> wrote:
>
> Could you explain the heart thickening? My son's heart had lining
separating the two sides of the heart get thick. Maybe the rest did
too but we don't know. When you said thickening did you mean the
whole heart or just part of it?
>
> Sorry I forgot the medical terms. The first day of this year
was the 6 month mark of his death but we never got a firm diagnosis
of Noonan's but it is one that is still at the top of the list.
>
> Stephanie Kunzler
>
> livesimplecolorado <red_lionfish@...> wrote:
>
> The biggest thing with Noonans is the type of Heart defect - it is
a
> Pulmonary Valve stenosis which can involve VSD's or ASD's. The
other
> big issue with noonans is the muscle thickening in the Heart.
> Usually a dead ringer for Noonans. Our son had all of these issues.
>
> Take Care
> Christina
>
> >
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