Keep On Movin' Soul ll Soul
There was NO support for parents who have children with all forms of Congenital Heart Defects in the North Devon area. But that's about to change.....
Kay Adams is from Barnstaple her daughter Grace was born in 2008 with undiagnosed Transposition of the Great arteries and two VSD'S.
They had no idea that when thier beautiful baby girl was born thier life was going to be turned upside down and the trauma and pain they went through and still are going through is unbelievable, and no one will ever understand the pain and heart ache they go through unless you are a heart mummy or daddy.
Grace had open heart surgery at 12 days old and thank god it was sucessfull otherwise without surgery she would of died, You can not survive this CHD without surgery.
After Grace's correction she was unfortunalty left with a leaky aortic valve which up until last november needed no intervention. But unfortunately the leak is deteriating fast and she is now on medication and will be having her valve replaced in the next 6 months.
Since having Grace they have had no support what so ever apart from family and have struggled to deal with this on my own.
As far as Kay is aware there is no support groups in North Devon.
She now feels strong enough to help other parents and families who are in the same situation.
The aim for this group is to offer support locally, raise awareness and fundraise for Bristol Childrens hospital and for SCBU at NDDH and Kay would also like to hold monthly get togethers for parents and...children.
This group is here for you all to support each other, offer advice, scream and shout and most importantly to know that YOU ARE NOT ALONE!
For more info click here to see the support group set-up on Facebook. https://www.facebook.com/groups/northdevonheartbabies/