Imagine...A Window Into Our World

Imagine… A Window into Our World Congenital Heart Defect Awareness Through the Eyes of Parents by Vanessa Sapp

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Causes for most CHDs are unknown. Often the mother has led a healthy lifestyle. Defects develop soon after birth before most women know they are pregnant. CHDs affect all races, religions, and sexes. That is more than 32,000 babies born with CHD every year! In the United States, approximately 1 in 125 babies is born with a congenital heart defect.

Most babies appear healthy after birth…

and do not show signs and symptoms until after they go home… ,[object Object],[object Object],[object Object],[object Object]

Many parents do not recognize the symptoms as abnormal and sadly, some babies reach a life threatening state or die before diagnosis.

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If the CHD is discovered, you may get to hold and kiss your baby one last time…

before they attach all these tubes and wires… ,[object Object]

And then imagine your child being taken away by a life flight… ,[object Object]

Imagine the possibility of your child enduring open heart surgery.

If he survives and returns from surgery, imagine not being able to hold and comfort your child… ,[object Object]

Imagine bringing your other children to the hospital to visit the new baby…trying to explain why there are so many machines and tubes and wires… ,[object Object]

Imagine taking your first family photo in the hospital… ,[object Object]

Imagine living for weeks…maybe months in a hotel and hospital….

waiting… hoping… praying… ,[object Object]

Imagine time standing still…time no longer being measured by a clock…but by the ticking of a machine. ,[object Object]

imagine the possibility that you may never hold your child again… ,[object Object]

Imagine your child survives and comes home with monitors, feeding tubes and medications. ,[object Object],[object Object],[object Object]

Imagine asking visitors to wash their hands and wear a mask before holding your child… ,[object Object]

And then imagine after all the specialized care and precautions… ,[object Object]

but his heart and body are not strong enough to fight the infection. ,[object Object]

Hopefully your child recovers and returns home. ,[object Object]

There will be many doctor visits…

and the possibility of more hospital stays…

Common illnesses like a cold, the flu or strep throat… ,[object Object],[object Object],[object Object]

Some of these children eventually need heart transplants. ,[object Object]

Congenital Heart Defects cause more deaths in the first year of life than any other birth defect.

Please meet John Connor…born August 24, 2006 ,[object Object],[object Object]

He had open heart surgery on September 1st… and finally got to go home on September 12th! ,[object Object],[object Object]

Due to misdiagnosis, lack of knowledge and awareness, and complications of surgery… ,[object Object]

Please meet a few more of our precious angels… ,[object Object],[object Object]

That was a window into our world. ,[object Object]

So, how can you help? ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

And then imagine… ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

This is another window into our world…

Please meet a few of our CHD warriors…

Please… help us give them more tomorrows!

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And if you were left wondering… ,[object Object],[object Object],[object Object]

22q11 deletion ,[object Object]

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ASD Atrial Septal Defect ,[object Object]

Atrial flutter ,[object Object]

AS or AVS or AVSD Atrioventricular Septal Defect ,[object Object],[object Object],[object Object],[object Object]

BAV Bicuspid Aortic Valve ,[object Object]

CHARGE Syndrome ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]

CoA Coarctation of aorta ,[object Object]

DILV Double Inlet Left Ventricle ,[object Object]

DORV Double Outlet Right Ventricle ,[object Object]

Epstein’s Anomaly ,[object Object]

HLHS Hypoplastic Left Heart Syndrome ,[object Object]

HRHS Hypoplastic Right Heart Syndrome ,[object Object],[object Object],[object Object]

MVP Mitral Valve Prolapse ,[object Object]

Noonan Syndrome ,[object Object]

PDA Patent Ductus Arteriosus ,[object Object]

PFO Patent Foramen Ovale ,[object Object],[object Object]

Shones Complex ,[object Object]

TGA Transposition of Great Arteries ,[object Object],[object Object],[object Object]

TOF Tetralogy of Fallot ,[object Object],[object Object],[object Object],[object Object],[object Object]

Truncus Arteriosus ,[object Object]

VSD Ventricular Septal Defect ,[object Object]

Tuberous Sclerosis ,[object Object]

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