Posted: Feb 7, 2011 4:12 PM by Andy Koen
Updated: Feb 7, 2011 6:42 PM
To see three year old AnnaSophia Berry today, it's hard to imagine just how fragile her early life was. She was diagnosed with a congenital heart defect at 9 days old and had her first open heart surgery at 11 days.
Her mom Mary says the speed of it all was hard to cope with.
"It was just a very scary, devastating time," Berry said.
Diagnosed as many as 1 in 100 children, congenital heart defects are the most common form of birth defects. Yet most parents feel the way Mary did, like they have no where turn.
"You're afraid to go to the bathroom, you're afraid to get something to eat because what if something happens to my child while I'm gone," Berry said.
What started as simple conversations between parents in the ICU has now turned into a formal support group called the Mended Little Hearts of Colorado Springs.
Berry says the group's outreach to other parents has been very rewarding. "It's been a wonderful, wonderful thing to be able to come into these hospital environments to support for these families."
The doctors who treat most of the childhood heart patients in Colorado Springs are supportive of the group and their mission. Dr. Gregory Brames of Pediatric Cardiology Associates said, "it's a great resource for families to be able discuss [a CHD diagnosis] with other families that have already gone through that."
Officially organized as a non-profit in November, the group has ambitious goals. Berry says they plan to raise money for ICU care packages for families who are in the hospital. They have also helped other branches of the Mended Little Hearts to get started in Grand Junction and Denver and are organizing what they hope will be the largest one-day blood drive in Colorado Springs history.
Of the roughly 40,000 units of blood used every day in the US, Berry says more than half is used by children with congenital heart defects. "So, as we were barnstorming what this group is going to do, we came up with this idea that we wanted to give back."
The blood drive will take place on Thursday from 10:00 a.m. and 2:00 p.m. at the Colorado Springs Dodge dealership (Woodmen and Austin Bluffs) and the Stetson Hills Police Substation.
Blood donations will also be collected on Thursday at the Penrose Main Hospital blood bank, the Memorial Hospital Central blood bank and the Memorial Hospital's Urgent Care Facility in Briargate during regular business hours. The Air Force Academy will also be hosting a blood drive for group on Friday.
Additionally, Mended Little Hearts is currently displaying several large color posters in public areas around the city as part of an awareness campaign about childhood heart disease. Each poster tells the story of a child in our community who has survived CHD.
The group meets on the second Thursday of each month. Parents who are interested can contact Melissa Koinzan by email at ColoradoSpringsCO@mendedlittlehearts.org for more information.