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

[Guest guest]

Yuka-

If it's any help, Aubrie had a repair of CoA at 8 days old. She also had

VSDs that closed on their own with no further intervention. She did not

have pulmonary stenosis, but does have a bicuspid aortic valve which causes

her no trouble. The CoA seemed like a huge deal when the surgery happened.

But really, it was easy as pie for the surgeon and has led to no further

complications. I hope the same is true for this new pumpkin.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Yuka Persico

Sent: Wednesday, June 20, 2007 4:51 PM

To: CHARGE

Subject: Coarctation of Aorta (CoA), Ventricular Septal Defect

(VSD) and pulmonary stenosis

Discharge is being put off. Results of the sleep study reveled a third heart

defect. Now the darling baby has Coarctation of Aorta (CoA), Ventricular

Septal Defect (VSD) and pulmonary stenosis. Initially heart surgery was set

into the future - at five or six months. Now it is being scheduled as soon

as possible. This precious baby doesn't seem to have any noticeable

difficulties managing his secretions post gtube insertion and fundoplication

- his oral and nasal cavities are delightfully " just right " , dry and clear.

I am so hopeful that in addition to correcting the heart defects themselves

that this surgery will resolve the baby's O2 desaturation challenges....and

simplify after discharge care......

As always - words of wisdom and of the heart are invited......

y

[Guest guest]

Yuka,

Just an encouraging word... had coarctation of the aorta and a

VSD...the VSD closed on its own and the surgery to correct the coarct

was a great success, though tricky, at six days old and barely 4

lbs. I still remember the surgeon walking down the hall toward us

shaking his head...they used a Gore Tex patch to fix it. She had a

second surgery at age nine to " open it up again " , since the patch

obviously did not grow with her,and has a great report from a

cardiology standpoint...

G

> Discharge is being put off. Results of the sleep study reveled a

> third heart defect. Now the darling baby has Coarctation of Aorta

> (CoA), Ventricular Septal Defect (VSD) and pulmonary stenosis.

> Initially heart surgery was set into the future - at five or six

> months. Now it is being scheduled as soon as possible. This

> precious baby doesn't seem to have any noticeable difficulties

> managing his secretions post gtube insertion and fundoplication -

> his oral and nasal cavities are delightfully " just right " , dry and

> clear. I am so hopeful that in addition to correcting the heart

> defects themselves that this surgery will resolve the baby's O2

> desaturation challenges....and simplify after discharge care......

>

> As always - words of wisdom and of the heart are invited......

>

> y

>

>

[Guest guest]

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