CHD | Imamother

amother

Tue, Jul 13 2010, 9:14 am

My 5 month old son was born with Bicuspid Aortic Stenosis. He may need a balloon to enlarge the aortic valve, which tends to lead to valve replacement later on. Does anyone know someone who went through this? I am having a very hard time dealing with the situation.

My husband would prefer for me to keep the situation under wraps, since he feels that a Brocha is found in something that is hidden. I am not sure for how much longer I will be able to deal with this on my own - only my immediate family is involved at this point.

natmichal

Tue, Jul 13 2010, 10:25 am

First - mazal tov for your son! with all the difficulties you're going through he's still a great bracha.
I haven't gone through this CHD and don't know of any one with it, but I had/have pretty serious CHD myself.
From what I read on the net, there is a solution to this problem, and once you enlarge the valve/replace I later, your son should iy"h be able to lead a normal life- even if he'll be taking medication, which from my experience- you can live with (as a kid, one of my friends had a few of the pills I needed at her house for all the time when we decided on a last minute sleep-over!)

Since I can't tell you how it will be, I want to tell you what I can:

First- as a CHD, please relate to your son as if he is totally normal. To this day, I strongly believe (and am not the only one to)that the reason I succeeded in leading a normal life including but not limited to going to ballet and music classes, getting a degree, getting married and having children (that included bugging my drs quite a bit ;-) )is greatly due to the facts that my parents made it possible for me to do so, and let me live like a normal child (not an easy thing to do for them since I was a firstborn and no-one could tell them if and how I would live). I know it might sound crazy to you now, but please keep this in mind and try - for your son 's sake.

second- for you: While I respect you dh and your decision to keep the situation quiet, I personally disagree with burying things such as that. sure, I would not go screaming it on the roofs, but if asked, I'd be honest and tell people right out. In any event, some point people might start trying to guess what is wrong with the baby, why he's always at the dr, hospital, out of breath etc. Much better tel them so they can daven than make them fall in a lashon harah pit, in my opinion. You might also be surprised to find others who went through this, and get some emontional and physical support during c'v hard times.
I don't usually tell people straight out what my problems are (especially since I'm past chd correction even though I'm still under close control), but I do volunteer the info when asked (why do you only have X kids...)or when I need support (like when the dr tells me I shouldn't have another kid). People know me as a fully functioning person, wife and mother, I never beg for attention because o it but they don't roll their eyes when something happen and understand right away when I tell them I have to leave the lids for the day with them to see a specialist. It's not something people talk about and if anything it sows ma'asei Hashem to all.

then again, that's just my personal opinions. ]

Feel free to pm me if you do want support

Hatsla'ha and Refuah Shleima