CHD Awareness since 2015

Helping Kids with 

Congenital Heart Disease 

One Heart at a Time

Firefighters

 
Did you Know?

Brave little Hearts for Michael and Friends
National Night Out 
Tribute to the 
First Responders 

Tuesday,  August  10, 2021  ~  5 pm - 10 pm

Brave little Hearts for Michael and Friends, will host a garden party to share CHD Awareness and and present community giving with raffle and bingo ticket opportunities. 

The night is designed to accomplish six goals:

◆ Provide an opportunity for neighbors to meet one another.

◆ Increase interaction and communication among citizens, police, and city leaders.

◆ Build relationships of trust and respect among residents, police, and city leaders.

◆ Encourage citizens to become involved in fighting crime.

◆ Allow people to recognize and celebrate the successes they have achieved through cooperative efforts.

◆ Give residents and police a chance to recommit to working together.

PA HLHS DAY 

March 6th

"Words Matter"

In Memory of our Charter Member, Michael Winchester,

( March 26, 2014 - March 6, 2017) 

all the Heart Angels, along with those Heart Warriors living with Hypoplastic Left Heart Syndrome, HLHS. 

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Hypoplastic left heart syndrome (HLHS) is the most severe form of congenital heart defect (CHD). The first successful intervention for it was undertaken by Norwood in 1983.

So much progress has occurred over the last 35yrs. We support university studies. We hope to begin our scholarship program, to encourage more medical and biosciences to research and find the cure for CHD. There is currently no cure, and still much to learn to help fight the #1 cause of infant mortality. 

 

Mortality associated with the Norwood procedure remains the highest among common congenital heart procedures. An analysis of resource utilization for the 35 most common structural birth defects showed that the Norwood procedure is associated with the highest cost and the third longest length of hospital stay.

This is why, we bring awareness to CHD, HLHS. It is a lifetime journey. It takes a family village, and community volunteers and a team of Cardiologist to correct and maintain the function of the heart of a CHD HLHS kid.

 

 

"WHERE THERE IS NO STRUGGLE, THERE IS NO HEART."

"Keep the Heart Pumping"Denzel Washington

Volunteer and Donate Today!

 

Marble Surface

Tribute to

Mr. Russell

The time stand still, through aperture of the lens. He was a volunteer photographer for our organization  from the start. He was a quiet giant. Like the camera aperture Mr. Larry, allowed light into our organization. We will all miss you and your professional skills in photography and media technology. 

Hospital
Baby's Grasp

CHD WORLD 

Congenital Heart Disease (CHD) is the most common birth defect in America, on average affecting 40,000 births per year. About 25% of these babies are born with a Critical Congenital Heart Disease (CCHD) where the heart defect will require multiple surgeries within the first year of life. Brave little Hearts Charter Member, Michael Richard Winchester had the CCHD Hypoplastic Left Heart Syndrome. The left side of Michael’s heart was underdeveloped along with other anomalies resulting in his case being a national study. Our constituents are the 40,000 babies born in a given year whose families need our support while they are caring for their long term hospitalized child praying for the date the doctors clear their child to go home.

CHD Families are overwhelmed by the process of preparing the home for a CHD Baby.  It's were Babies thrive best in a loving home environment. It's also the long days and nights for caregivers. So you will need home nursing and therapy visits. Home is now a mini clinic for CHD kid and care team. 

 

Brave little Hearts intends to replicate these services by empowering one family at a time. We have taken this approach because it is a very personal journey. Brave little Hearts for Michael and Friends sees this journey as a matter of the heart.  The relationship we have built with Children’s Hospital of Philadelphia CICU will be replicated to other hospitals that serve CHD families. Funding is needed for projects and programs to support the children and families impacted by Congenital Heart Disease.

How We Support CHD Families

Community 

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Give

Jar of Coins

Benefits

Community

  • 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 children and their families.

  • Advertising and assistant marketing awareness of CHD programs and symptoms.

  • Family Training  programs for CPR Training and Defibrillators. 

Give

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.

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 from in the medical and Scientist, Profession. We hope you would assist Patient Advocacy.

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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 is underfunded and most organizations like Brave little Hearts are in place to help fund research.

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.

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!

CHOP CICU MEALS

Birthday Boxes

Onesies and Hat Kit

Pumpkins and Paint Kits 

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