Child with Chronic Cardiac Issues?

I am not in the same boat but I just wanted to send you ::hugs:: and let you know, just the other day I was in the waiting room to see my doctor and they had this little newsletter listing a ton of different support groups for different issues. I believe one of them was for people in just your situation. It sounds like that is just what you need. Please, call your local hospital system and ask if they have any of these groups! Best wishes.

I don't have a son w/any health issues at the moment but I want to send you encouragement and support nonetheless.

I know its hard when there is something wrong w/our kids, esp when you see other mamas out there running around w/their healthy kids.

My baby was born 2 months premature. I had to live in agony the whole time seeing other moms cuddling their babies at the store, church or in the neighborhood while my baby was all tubed/hooked/venhilated up in some incubator at the hospital not knowing if he was going to die on any given day. I couldn't even hold him. I just had to watch him through the glass cover and if I wanted to touch him I had to use the gloves that were attached to the cover. So, I kind of know the isolation you are feeling.

Can you try calling up your local hospitals or even the nearest children's hospital and find out what services they offer to support families dealing with their child's illnessess? I know the one here in Houston offers something like weekly/monthly get togethers for families with children of long term illnesses. Also, there should be a Ronald McDonald house around. Their main purpose of existence is to offer support services to families dealing w/their child's illness, short or long term. Try and see ifyou can find moms there you can talk to.

Peace and prayers to you and your son's journey.

My oldest daughter had a heart transplant, so I get that feeling of "no one really and truly understands". (she was 16, and is now 26, so your situation is still different).

My suggestion is to search facebook for a group. My daughter belongs to a facebook group for transplant patients, so I bet there is one for parents of children with heart defects!

My girlfriend's 3rd baby was born with Transervus of the Greater Arteries and required surgery within the first week of life. If you want, I can give you her e-mail to contact. He's now almost 8, I think.

Hi,

My son had a VSD corrected when he was a year old. I understand what you are going through and how hard it is. Everyone probably keeps telling you it will be ok and that is not what you want to hear sometimes! I just wanted people to understand how difficult it was! It is probably one of the hardest things you are going to go through in life. I had to deal with just one open heart surgery for my son - dealing with multiple of these has got to be a roller coaster ride for you. Please know that you need to keep yourself healthy - mentally and physically to be able to deal with this. So, if you need some time out and have to go do what you need to do, don't feel guilty!! Do what you need to do to decompress - yoga/exercise class/massage/facial whatever works for you! But once in a while go do it. I never looked for a support group, but maybe you can find one - even if it is not related to heart conditions - maybe a group of moms that have children who have needed multiple surgeries. Maybe you can start one yourself on a site like meetup.com!

I hope you all do well and best wishes to your son!! Stay strong!!