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

Imagine holding your child after birth… and being grateful that she looks perfectly healthy!

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!

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!

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.

Imagine rushing your precious baby to the hospital…

and hearing the doctor tell you that your child has a congenital heart defect.

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

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!

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!

all necessary for your child to live!

Imagine your child leaving in this pod… instead of a car seat.

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!

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!

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!

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.

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.

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…

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.

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?

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.

… 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…

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.

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!

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.

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!

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).

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.

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!

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.

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.

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

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!

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!

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…

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

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

Aortic Atresia – absent valve between left ventricle and aorta

Mitral Atresia – absent mitral vlave

Pulmonary Atresia – absent pulmonary valve

Tricuspid Atresia – absent tricuspid valve

ASD Atrial Septal Defect A hole in the wall between the left and right upper heart chambers

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

a well organized but overly rapid contraction of the atrium

AS or AVS or AVSD Atrioventricular Septal Defect a complex defect best described as a large hole in the middle of the heart

a complex defect

best described as

a large hole in the

middle of the heart

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

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: C oloboma H eart defect Choanae A tresia R etardation G enital abnormalities E ar abnormalities

a combination of birth defects that may include:

C oloboma

H eart defect

Choanae A tresia

R etardation

G enital abnormalities

E ar abnormalities

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

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

the heart is located on the right side of the body

DILV Double Inlet Left Ventricle both atriums are connected to the left ventricle

both atriums are connected to the left ventricle

DORV Double Outlet Right Ventricle both the aorta and the pulmonary artery arise from the 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

Characterized by the displacement of the tricuspid valve

HLHS Hypoplastic Left Heart Syndrome the left side of the heart is small or does not develop

the left side of the heart is small or does not develop

HRHS Hypoplastic Right Heart Syndrome the right side of the heart is small or does not develop

the right side of the

heart is small or

does not develop

MVP Mitral Valve Prolapse mitral valve flaps do not open and shut in coordinated fashion

mitral valve flaps do not open and shut in coordinated fashion

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

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

PDA Patent Ductus Arteriosus connection between aorta and pulmonary artery does not close after birth

connection between aorta and pulmonary artery does not close after birth

PFO Patent Foramen Ovale A hole in the wall between the two upper heart chambers

A hole in the wall between the two

upper heart chambers

Shones Complex multiple left heart anomalies

multiple left heart anomalies

Pulmonary Stenosis – a narrowing of the pulmonary valve SVC Stenosis – a narrowing of the superior vena cava

Pulmonary Stenosis – a narrowing of the pulmonary valve

SVC Stenosis – a narrowing of the superior vena cava

TGA Transposition of Great Arteries arteries are reversed; the aorta arises from right ventricle and the pulmonary valve arises from left ventricle

arteries are reversed;

the aorta arises from right ventricle and

the pulmonary valve arises from left ventricle

TOF Tetralogy of Fallot consists of four defects: ~VSD (ventricular septal defect) ~PS (pulmonary stenosis) ~large Right Ventricle ~overriding aorta

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

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

VSD Ventricular Septal Defect a defect or hole between the lower chambers of the heart

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

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