My daughter, Tessa, was born with a congenital heart defect called Atrioventricular Septal Defect (AVSD or AV Canal). We learned of her heart problem at a Cardiology appointment when she was 5 days old after her Pediatrician heard her heart murmur at her well-baby checkup. We were devastated; we had never really heard of problems like this and left the Cardiology office frightened. We desperately wanted to speak with someone who had been through this before, to help us understand we could get through her open-heart surgery we had to face 3 long months later, but Tessa's Cardiologist was unable to direct us towards any support groups here in Colorado Springs, Colorado. We luckily were able to find a family to speak with about our concerns and what to expect during the surgery, but it was due to total luck (through a friend of a friend type deal).
Tessa had her surgery at the Denver Children's Hospital in June, 2008. She did remarkably well and is "free to become an Olympic athlete, if she chooses to do so," her Cardiologist tells me. The whole experience was terrifying, but we got through it. We feel the reason we had to go through this is because we need to help others get through these open-heart surgeries. We want to provide support to those in our area who feel the need to talk to someone who's been through this before, as we were desperately seeking before Tessa's surgery. Please feel free to leave a comment with contact information and we will be in touch.
4 comments:
Your daughter is beautiful! Your photos being back memories of my own daughter's heart journey. It's a shame so many of us go through this alone, not knowing until afterwards what a HUGE supportive community there is of "Heart Moms" (and Dads!)
I hope your efforts reach those in time -- those whose little ones are about to go through surgery and who need to know they are not alone!
Hi you had responded to the news article on KOAA... so I'm trying to start up a group for CHD. It looks like you have tried as well. I know lots of people out east, that’s where we had his surgeries and I want to find people closer to home. Call me if you want. I would love my son to not be the only person he knows with a zipper. 232-5730
Hi, my name is Mindy Younger. I came across your blog from the "Beat goes on" blog. We also have a blog you can check out. We had a daughter Emma who was born with Hypo-Plastic Left Heart Syndrome in August of 2006. She had open heart surgery at 11 days old. After 6 weeks in the Denver hospital we finally got to come home. She wasn't eating enough so she needed a G-tube. After 3 months of life she passed away. It was the day after her G-tube surgery. She changed our lives forever and made us a stronger family. In January of 2008 we had a son Thaddeus who was born with Coarctation of the Aorta and a VSD. He had open heart surgery at 2 days old and a heart catheter at 3 months old. He is doing great and is almost 15 months old. I hope to be a part of this support group for familes going through this same thing. I look forward to meeting you at any upcoming functions.
Mindy Younger
576-8352
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