I think this growing problem doesn't get the word out as much as it should. Parents that have children born with heart health issues feel alone because they don't really know how wide this community is. Are there any parents on here who had a child diagnosed with a congential heart defect? How did it make you feel? Have you found a good support system that you would like to share?

Originally Posted by lilyflower_1978

I think this growing problem doesn't get the word out as much as it should. Parents that have children born with heart health issues feel alone because they don't really know how wide this community is. Are there any parents on here who had a child diagnosed with a congential heart defect? How did it make you feel? Have you found a good support system that you would like to share?

My first born died of her heart and lung defect. She was born May 9th and died on Mother's Day of that year. She had Ductus Arteriosus Syndrome.

Years later I met a girl who had survived with the condition. She spent her life in and out of hospitals because she had to have surgery at regular intervals as she grew and the valves that had been fashioned for her heart had to be enlarged. She was severely scarred form the repeated cardiac procedures. I was grateful that my daughter hadn't suffered that way.

I am very sorry for your loss. I know the medical world is forever changing just sad it wasn't changed enough to help your daughter.

I am so sorry to hear about the loss of your child. I would have to agree though that alot of attention is not brought to this problem. I have a friend whose daughter has heart problems and just had her third surgury at the age of five. She has one more at the age of 18 but I remember her stating that there is not alot of support for this problem. She has found some people though through the internet but without that she wouldn't have a lot of people she can talk to that are going or have gone through the same situation.

I have found a website that gives support to CHD. I surprised to see the amount of people on this site. It is actually geared towards adults with CHD but also has a family section for parents of children of CHD. The initials of the site are ACHDA. Put that in a search engine and you will find their site. I don't know how to post links on here.

I think the best place to find a support group and other children/parents going through the same thing is at the hospital where the child is getting treatment.

I do think that congenital heart defects are more common than a lot of people think but I think that the care is centralized at specialty centers.

SageMother, I am very saddened to hear of your loss.
My cousin just had a baby with some heart problems. They seem to be resolving.
I hope that she continues to do well.