W Re: Coarctation of Aorta (CoA), Ventricular Septal Defect (VSD) and pulmonary stenosis

[Guest guest]

Our little Jillyan had her CoA repair at 20 days of age (was supposed

to have been at 3 mos -- but Jillyan had other plans to get out of

the hospital earlier). She was actually in congestive heart failure

when she was rushed into surgery and we got a different baby once

this was fixed - reflux stopped completely and she started drinking

from a bottle.

Her VSD is so small it is considered a non-issue. She did have

subaortic stenosis and we finally had to have surgery in 8/05.

Again -- after the second heart surgery we got a different child --

she tolerated longer therapy sessions and finally began to walk and

also this year went to school full time. Little did we know that the

stenosis was making her sicker than we thought. We had the surgery

done as the pressure of the blood flowing into the defective aortic

valve was increasing and they wanted to prevent valve replacement

surgery.

My husband and I didn't want two heart surgeries, but both improved

her quality of life and she surprises us constantly.

Huggins

Mom to Jillyan (now 6) and Hailey (10)

>

> Dear -

>

> Thank you for chiming in. I am sure to know so many of our little

ones have endured and thrived under similar circumstances is of great

comfort to the family this morning as they bravely face the ever

unfolding conditions of their son's birth head on, on a schedule not

of their choosing....***sigh*** we;ve all been there......

>

> with love,

> yuka

>

>

> Re: Coarctation of Aorta (CoA), Ventricular

Septal Defect (VSD) and pulmonary stenosis

>

>

> Kennedy also had a coarct, ASD/VSD/PDA repair @ 9 days old with

the gore tex

> patch and a human homograft. It was successful - she did have to

have a

> valve job done in 2004 but the coarct repair has remained intact

and

> everything is good for her cardiology wise at the moment.

>

> --

> Weir

>

> Personal Web Site:

> http://chargesyndrome.info

>

> The Adventures of Kennedy Blog:

> http://chargesyndrome.blogspot.com

>

> Secretary, CHARGE Syndrome Foundation Inc:

> http://www.chargesyndrome.org

>

> Email:

> lisa@...

>

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>