How We Support CHD Families
Community
Support
Benefits
Community
Through our experience of living with a child with a Critical Congenital Heart Disease, we found there are many gaps in services for this population.
It is a difficult process to navigate especially when you are in the midst of a crisis.
-
Identify transitional support groups, educational resources and medical advocacy assistance.
-
Connect caregivers to social activities and events in the community
-
Build Partnerships to grow awareness and increase support for CHD children and their families.
-
Promote CHD Awareness Programs
-
Family Training programs for CPR Training and Defibrillators.
Support
Families suddenly find themselves in a space where things are extremely difficult to comprehend.
As they are sorting out their new life, learning all they can about their child’s condition.
We hope to fill in the gaps with financial resources to assist with a smooth transition.
We welcome volunteers the political leaderships, medical and science professions.
We hope to assist with Patient Advocacy. Administrative filing to Legal assistants.
n
We inaugurate human services for families and children impacted by Congenital Heart Disease, CHD.
All the proceeds go to :
-
CHD Awareness campaigns and events
-
Life sustaining equipment
-
Resources for families unique need.
-
Research for Advancement in Treatments.
-
CHD awareness and treatment research is underfunded, most organizations like Brave little Hearts are in place to help fund research.
We host Earth Day and Humanitarian Day, CHD Awareness WEEK and PA HLHS DAY events. All to bring awareness and raise capital investments for CHD Caregivers.
Caregiver's
MIX and SHAKE
Photo's and Videos are for Authorized users only.
Meet Some of Our CHD Kids
Aiden
Is 10 months old and as a CHD baby he has a pre-existing conditions. Oct. 11 th PA IVS- had glenn in March and so far so good! Born at CHOP and was lucky to have a stent put in 5 days after birth.
Also due to prior heart attack, he remains in heart failure, but is stable. He remained inpatient for 5 months, coming home with a gtube and many medications. He has had two more Open heart surgeries and multiple caths.
Photos are attached. The first after this first open heart surgery. The second is current, and Smiling. So Powerful!
Charlie
At the age of 4, this heart warrior overcame his first OHS at 2 weeks old, he had multiple complications, including a myocardial infarction during chest closure, thus not able to fully close and still has a physical chest deformity.
Grace
Age: 3 months
CHD condition: Gracie has a large VSD with mild-moderate pulmonary stenosis and had open heart surgery at the end of this past September 2020.
Bridgette
Age: 2 years
CHD: HLHS
Hypoplastic Left Heart Syndrome
Bridgette is the youngest of four kids, and a beautiful addition to our family. She is gearing up for her 3rd birthday and 3rd Open heart surgery this fall.
Jace
age: 1 year old
CHD: DORV, VSD, severe pulmonary stenosis, and R aortic arch. He was at Boston Hospital for Children
to sustain a Trilogy bipap machine.
CHOP CICU
Eleanour
Age: 3years
CHD: HLHS, DORV, Heterotaxy, unbalanced av canal. She is currently receiving palliative care because as of now there is no surgical option. She is on oxygen almost constantly while awake.
Leo
Age: 4
CHD condition: transposition of the great arteries. Cardiac cath the day he was born. Arterial switch operation by Dr. Spray day after he was born. Follows with Dr. Natarajan. Doing great!
