Imagine…A Window into Our World

Congenital Heart Defect AwarenessThrough the Eyes of Parents

by Vanessa Sapp

Imagine holding your child after birth…

and being grateful that she looks perfectly

healthy!

Oh, imagine the excitement and joy of bringing your baby home…possibly to meet a brother and

sister!

But then imagine being at home when your “healthy” baby starts turning blue!

Imagine rushing your precious baby to the hospital…

and hearing the doctor tell you that your

child has a congenital heart defect.

In the United States,

approximately

1 in 125 babies is born with a

congenital heart defect.

That is more than

32,000 babies born with CHD

every year!

CHDs affect all races, religions,

and sexes.

Defects develop soon after birth

before most women know

they are pregnant.

Causes for most CHDs are

unknown. Often the mother has led a healthy

lifestyle.

Most babies appear healthy after birth…

and do not show signs and symptoms until after they go home…

• Cyanosis (blue skin/lips)• Lethargy• Poor feeding• Fast or difficult

breathing

Many parents do not recognize the symptoms as abnormal and sadly, some babies reach a life

threatening state or die before diagnosis.

Please…

learn the signs and symptoms of

congenital heart defects.

It could save a life!

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…

all necessary for your child to live!

Imagine your child leaving in this pod…

instead of a car seat.

And then imagine your child being taken away by a life flight…

without you!

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…

because he is at risk for infection and YOU could make him sicker…or even die!

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…

and hoping this is not their only memories of the baby!

Imagine taking your first family photo in the hospital…

and wondering if it will be the last.

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

waiting… hoping… praying…

for your child to come home.

Imagine time standing still…time no longer being measured by a clock…but by the ticking of a

machine.

And imagine every time one of those machines alarm…

imagine the possibility that you may never hold your child again…

and that your child may never come home.

Imagine your child survives and comes home with monitors, feeding tubes and medications.

Would you remember how to accurately read the monitors?

…or how to feed your child?…or when to administer the medications?

Imagine asking visitors to wash their hands and wear a mask before holding your child…

…because he is at risk of infection.

And then imagine after all the specialized care and precautions…

imagine your child gets sick and has to return to the hospital…

but his heart and body are not strong enough to fight the infection.

It is estimated that more than 6000 deaths a year are caused by complications of congenital heart

defects in the United States.

Hopefully your child recovers and returns home.

But the worries are not over!

There will be many doctor visits…

and the possibility of more hospital stays…

and surgeries…

even on holidays!

Common illnesses like a cold, the flu or strep throat…

and routine cleaning at the dentist…

all are potentially life threatening to a person with CHD.

Some of these children eventually need heart transplants.

Of the approximate 700 children listed on the transplant list…only about 275 will receive a heart

in time to save their life!

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

Several days after his birth, he was diagnosed with Truncus Arteriosus…

and later, at another hospital, he was also diagnosed with pulmonary atresia, right ventricle aorta, ASD (atrial septal defect) and VSD (ventricular septal defect).

He had open heart surgery on September 1st…

and finally got to go home on September 12th!

On October 16, 2006…

John Connor stopped breathing and passed

away.

Due to misdiagnosis, lack of knowledge and awareness, and complications of surgery…

about 51% of deaths caused by congenital heart defects are children under the age of one year!

Please meet a few more of our precious angels…

We share them with you to make you aware.

There are no cures and not enough funds for research for better treatment

options.

That was a window into our world.

But one day, CHD could affect someone you love and be part of your world.

So, how can you help?

• Please, consider donating to a CHD research program or support group

• Write you local government requesting mandatory prenatal/newborn echos *You can start today by signing this worldwide petition at http://www.gopetition.com/petitions/every-baby-needs-an-echocardiogram.html

• Support stem cell research

• Donate blood

• DONATE LIFE

• And please…SPREAD AWARENESS ABOUT CHD! *You can start by signing this CHD in the Media petition at http://www.gopetition.com/petitions/media-awareness-for-chd.html

And then imagine…

• Planned treatment through early detection with fetal echos

• Life saving detection with infant echos• Finding a cause to allow for better treatment

options• Improved long-term treatment• More children receiving life saving treatments• More CHD Awareness• More children surviving with CHD!

This is another window into our world…

They run…

They play…

They laugh…

They love…

They live!

Please meet a few of our CHD warriors…

Please…help us give them more tomorrows!

Thank you to all who participated and made this awareness project possible.

Together…we will raise

HOPE FOR MORE TOMORROWS!

And if you were left wondering…

A congenital heart defect is a structural problem with the heart present at birth.

There are approximately 35 recognized CHDs.

Some of the CHD definitions follow…

22q11 deletion

Range of complex birth defects (including CHD) caused by a defect on chromosome 22

Aortic Atresia – absent valve between left ventricle and aorta

Mitral Atresia – absent mitral vlave

Pulmonary Atresia – absent pulmonary valve

Tricuspid Atresia – absent tricuspid valve

ASDAtrial Septal Defect

A hole in the wall between

the left and right upper

heart chambers

Atrial flutter

a well organized but overly rapid contraction of the atrium

AS or AVS or AVSDAtrioventricular Septal Defect

a complex defect

best described as

a large hole in the

middle of the heart

BAVBicuspid Aortic Valve

the normal aortic valve has 3 flaps that open and close…with BAV, there are only 2 flaps

CHARGE Syndrome

a combination of birth defects that may include:

Coloboma

Heart defect

Choanae Atresia

Retardation

Genital abnormalities

Ear abnormalities

CoACoarctation of aorta

a constricted segment of the aorta that obstructs blood flow to the body

Dextrocardia

the heart is located on the right side of the body

DILVDouble Inlet Left Ventricle

both atriums are connected to the left ventricle

DORVDouble Outlet Right Ventricle

both the aorta and the pulmonary

artery arise from the right ventricle

Epstein’s Anomaly

Characterized by the displacement of the tricuspid valve

HLHSHypoplastic Left Heart Syndrome

the left side of the heart is small or does not

develop

HRHSHypoplastic Right Heart Syndrome

the right side of the

heart is small or

does not develop

MVPMitral Valve Prolapse

mitral valve flaps do not open and shut in coordinated fashion

Noonan Syndrome

genetic – affects heart, growth, blood clotting, and mental & physical development

PDAPatent Ductus Arteriosus

connection between aorta and pulmonary artery does not close after birth

PFOPatent Foramen Ovale

A hole in the wall between the two

upper heart chambers

Shones Complex

multiple left heart anomalies

• Pulmonary Stenosis – a narrowing of the pulmonary valve

• SVC Stenosis – a narrowing of the superior vena cava

TGATransposition of Great Arteries

arteries are reversed;the aorta arises from right ventricle and

the pulmonary valve arises from left ventricle

TOFTetralogy of Fallot

consists of four defects:

~VSD (ventricular septal defect)~PS (pulmonary stenosis)~large Right Ventricle~overriding aorta

Truncus Arteriosus

only one artery arises from the heart and forms the aorta and pulmonary artery

VSDVentricular Septal Defect

a defect or hole between the lower chambers of the heart

Tuberous Sclerosis

rare genetic disease causing benign tumors to grow in brain and other vital organs, including

the heart