Saturday, February 14, 2009

Happy Valentines Day and more importantly, HAPPY CHD AWARENESS DAY!!!

I have posted a picture of Tommy that shows his scars, his personality (growling at a bubble that he wants to catch and pop), his life in the hospital on the cardiac step down unit, the machines that kept him alive and monitored his heart, and his heart monitor in the background. Click on the picture to enlarge it. Look at the scars. Look at the IV in his hand. Look at the heart monitor showing his oxygen saturation levels at 71!! For those new to our story, 71% is amazing for Tommy. He typically hovered in the mid to low 60s. To put into perspective...a healthy heart has 100% sats. Tommy's heart never sustained those kinds of sats without being given 100% oxygen through his trach collar. Just look at him. So full of fight and determination, but just two weeks later, I would watch him die right in front of me. Heart defects KILL!!!! Something more must be done!

I am so thankful for the research and awareness done in the past. Kids that used to die at birth are now living longer and longer. But it's not enough. My son is and angel. No more pictures. No more singing and signing "Itsy Bitsy Spider". No more throwing toys across the room. No more hugs, kisses and snuggles. More needs to be done! Lets educate ourselves and others. Pass this on to everyone you know!

Children's Heart Foundation

Some information from The Children's Heart Foundation:

What Is a Congenital Heart Defect (CHD)?
A CHD means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels.

There are many types of congenital heart defects, ranging from those that pose relatively small threat to the health of the child to those that require immediate surgery. Many types of CHDs and the surgical procedures your physician may recommend to correct the condition can be found in the Children’s Heart Foundation’s parent resource book It’s My Heart – Chapter 2.

Some CHDs can be detected pre-birth by a Level II ultrasound or by a fetal echocardiogram. After birth, congenital heart disease is often first detected when the doctor hears an abnormal heart sound or heart murmur when listening to the heart. Depending on the type of murmur, he or she may order further testing such as – Echocardiogram, Cardiac catheterization, Chest X-Ray, Electrocardiogram (ECG/EKG), Magnetic Resonance Imaging (MRI) or other diagnostic testing. More information about the diagnostic tests that may be used to identify a heart problem or check the status of a previous surgical procedure can be found in It’s My Heart – Chapter 4.

The warning signs of Congenital Heart Disease in infants and children may include a heart murmur or abnormal heart sound, cyanosis (a bluish tint to the skin, fingernails and/or lips), fast breathing, poor feeding, poor weight gain, an inability to exercise and excessive sweating.

Incidence, Morbidity & Mortality

Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
Congenital heart defects are the #1 cause of birth defect related deaths.
Congenital heart defects are the leading cause of all infant deaths in the United States.
Each year approximately 40,000 babies are born in the United States with a congenital heart defect. thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.


The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research.
The Children’s Heart Foundation has directed $3 million to 34 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada.
CHF has published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book.
CHF has established five Chapters and has volunteers in many US states.

Lifelong Disease

Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
There are an estimated 2,000,000 CHD survivors in the United States.
For the first time, more than 50% of the CHD survivors are adults.
10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

91,000 life years are lost each year in this country due to congenital heart defects.
The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.


More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact

Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

CHD Research
CHD research is drastically under funded in both the public and private sectors relative to the number of lives the disease affects. In the private sector, only 1% of every dollar received at the major private funder of cardiovascular research goes to any Pediatric cardiac research. Likewise in 2007, the National Institutes of Health's NHLBI (National Heart, Lung and Blood Institute) allocated less than 3% of every dollar invested in research to any Pediatric cardiovascular research.

CHD Research Goal
CHF advocates increasing both public and private funding of CHD research proportionate to the prevalence and impact of CHD

CHD Research Issues:

Focus on diagnosis, treatments, and prevention
Target for maximum impact on changing CHD patient population
Focus beyond survival to long-term outcomes
Prospective Studies
Large scale, multi-center research
Evidence-based medicine
CHD Research Strategies

Lobby on federal level
Increase patient and family research participation
Raise national awareness of cost/impact of CHD research

Current Research:
Click here for a link to a list of current reseach.

1 comment:

Emma and Mommy said...

Happy CHD awareness and Valentine's day. I will be thinking of Tommy and all the other little heart children today.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries