support group for kids with congenital heart defects?

[Anonymous]

Not sure if this is the right forum for this question, so if anyone thinks I should post it elsewhere, please let me know. I am new to DCUM.

DS (age 2) has a congenital heart defect. Aortic stenosis due to unicuspid valve. Requires regular monitoring but luckily he is asymptomatic. We found out last week that it is more serious than at first thought because there are secondary issues, namely ascending aortic dilation.

I am scared. I am scared to the point of nausea. I can't stop thinking about my two-year-old needing multiple open heart surgeries throughout this life.
I know no one dealing with this kind of thing. I could use some support and grounding. Does anyone know of relevant parent or family support groups in the area (MD/DC) that I could tap into?

[Anonymous]

Mended Little Hearts (www.mlhofdc.wordpress.com) and Tender Hearts (www.tender-hearts.net) are two groups you may want to join. My son has the same condition (bicuspid instead of unicuspid). Please feel free to email me directly if you'd like - [e-mail].

[Anonymous]

There's a group on babycenter.com that really helped me when my child was diagnosed. All I can say is always get a second opinion as to whether or not surgery is needed. I don't care how much you trust the doctor. Some will try to push surgery when it's not needed and can be monitored. *hello Dr. Asshole if you are reading this!*

[Anonymous]

You might try: http://tchin.org/support_groups/index.htm

Hang in there. My sister is a congenital heart defect survivor-- she's almost 30 and doing so well. Best to you and your family.

[Anonymous]

I don't know of any support groups, but I know very well what you're going through and am wishing you lots of strength and peace and good fortune. DC had open heart surgery at 2 years for a suddenly worsened supravalvar stenosis and going through that was hell for my spouse and I. We knew from birth that DC might need heart surgery, but hearing that it had suddenly reached the point that surgery was immediately necessary turned our lives upside down. It was a traumatic experience for us, but I have to say, for DC it was an easy recovery and, of course, something quickly forgotten at that age. It still scares me that DC may need surgery again in the future, but the repair is holding up nicely several years later. DC is healthy, strong, and has no recollection of our trauma. Although every now and then I get flashes of panic about what may happen in the future, for the most part, it is something that we have recovered from. Heart surgery now is so much better than even a few years ago and doctors are constantly making progress in achieving less invasive surgeries and better results. Definitely make sure you're confident about doctors, get second opinions if necessary, do your research, and fight for the best in treatments/surgery etc. We have a cardiologist we love and when it was time for surgery we pushed and he totally supported taking DC to Children's of Philadelphia for the absolute best in pediatric heart surgery (at least at the time) and we're very glad we did. Good luck and hang in there.