Sunday, February 8, 2009

Update and Happy CHD Awareness week

We are all beginning to feel better. Things are almost back to normal. I still have a pretty sore throat/cough. Elijah still has quite the cough but is just getting 2 treatments a day and back to eating and tearing up the place! Travis is now just on his asthma maintenece meds with a little cough still. Hannah is fine she barely even got a cold. She seldom gets sick. Jason is doing okay...still a cough, but better. I can TOTALLY understand now why Elijah quit eating/drinking and got so dehydrated. My throat hurt so bad that I couldn't eat much. Everytime I swallowed it just felt like it was ripping. It was awful! I am so thankful for the prayers.


Today is the first day of National Congenital Heart Defect Awareness week. Before our "journey" with Elijah began we had no idea what a CHD was. We had never heard of it before. The majority of our family had never heard of it, nor our friends. We are so blessed by God to have been chosen to be the parents of a CHD baby. Elijah (born with Hypoplastic Left Heart Syndrome or HLHS) is amazing. Any way, below is a little "education" for everyone. I hope you all will take just a few minutes and read through the information below and maybe pass the info on to help raise awareness and maybe it will help raise funds for research to help kids like my little boy.

Some websites you can visit are:
www.heartsofhopemi.org
www.jackofheartsfoundation.com
www.savinglittlehearts.com
www.med.umich.edu/mott/chc/patient_con_hyp.html
www.carepages.com (Elijahs page name is EliPalmer)
www.caringbridge.org

Here are some interesting/eye-opening facts:

Statistics from the March of Dimes

1. Congenital heart defects are the #1 birth defect in the US as well as the world and are the leading cause of infant death in the United States.
2. In the United States, over 35,000 babies a year (1 in 125) are born with a congenital heart defect.
3. Defects may be so slight that the baby appears healthy for many years
4. Defects may be so severe that they are in immediate danger. (HLHS is one of the most severe and occurs in 4 out of 10,000 births.)

Statistics from The Children’s Heart Foundationhttp://www.childrensheartfoundation.org

1. More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
2. 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.
3. In the US, 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 5 times greater than funding for congenital heart defects.
4. In the last decade, death rates for congenital heart defects have declined by almost 30% due to advances made through research.

According to http://tchin.org/aware/facts.htm:

* Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.
* It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.
* CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.
* Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.
* Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured".
* Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

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