congenital heart disease

amother

Wed, Sep 23 2009, 4:53 pm

my child has tof. with moderately / significant reg. Could someone explain what this means? is it moderate or significant? Also, I thought it's possible to live without valves altogether.

chaylizi

Tue, Apr 20 2010, 6:35 pm

amother wrote:

Also, I thought it's possible to live without valves altogether.

If that were true, what would the point of valve replacement surgery be?

amother

Tue, Apr 20 2010, 8:39 pm

My son also has tof. All I know is that he had extra muscles, a big hole and narrowing of the arteries. he had a repair and is b'h doing well. Good Luck.

amother

Fri, Nov 12 2010, 1:24 am

My son had heart surgery a year ago and has been doing very well since. The surgeon did a good job and said it was unlikly he would need another surgery. My son went off all heart medication a few monh post surgery. B"h he is healthy and well. I went to an appointment today for an echo and checkup and ws told that he still has a leaky valve and will probobly need to to be put on medication in the future and has the possibility of needing another surgery. I am upset as I thought this chapter of our life was done with. Right now we don't have to see the Dr for another 6 months.

Rodent

Fri, Nov 12 2010, 2:05 am

Sorry to hear about your son amother. I don't know a lot about heart issues but I hope the medication works for him and he doesn't need the surgery.

Our youngest has a VSD but it's small, the cardiologist said it should close on its own and isn't a great concern so I don't really belong here but thought I'd say hi anyway.

amother

Sat, May 14 2011, 11:48 pm

I have a son that went tru the fontan procedure anyway does any one have information on dr solovychick from columbia thanks

natmichal

Sun, May 15 2011, 1:02 am

No answer for amother above from me, but just some good news I have been wanting to share with you all for some time now:

I have tricuspic atresia and a single ventricule, and went through Fontan... and have just had my third baby on Purim.
As far as my dr knows, I'm the first woman to have three kids after a Fontan (there a quite a few who had 2), and b"h my heart dealt fine with it all.

Baby is super cute and his siblings are thrilled with him!

Enjoy your CHD kids and PLEASE treat them as if they didn't have all these complications. I believe (and I'm not the only one) that I managed in life the way I did because my parents acted this way with me (and that was when the odds for a normal life that they were given by the dr were not as good as what one would get nowadays).

Chizku VeImtzu

queen esther

Tue, Nov 01 2011, 10:48 pm

Thank you so much for your post!!! And a (belated) mazel tov on all your children. It is a big chizuk to hear about adult chd-ers! My 2 yr old has HLHS and his next big step will be"H be the Fontan, so I am starting to get nervous about that. Good to hear about your simchos!!

amother

Wed, Nov 02 2011, 11:03 am

I am overdue to give birth to a baby with dilated cardiomiopathy with the weakness in the right ventrical. anyone have experience or know someone who had a baby with this problem? I'm totally freaking out here.

amother

Mon, Dec 05 2011, 12:46 am

HI im new on this forum and would like to know if there are any adults with CHD and Married. I Had the revised fontan but am looking for chizuk from other married women who have CHD too. I have other issues too and would like to know if there are others out there dealing with it. I would suggest that anyone posting anonymously should take a number for themselves for exp. Anonymous 1 etc. like that one who wants to answer for another Anonymous person should be able to write back Anonymous 1 I have an answer, suggestion etc. to your question. if everyone is going to post Anonymous it gets very confusing if you wont to reply to some individual. So ill start by calling myself for time being Anonymous 49. Maybe we can divide the forum later to parents with Children with CHD and adults only.