CHD Awareness

So, everyone knows that Valentines Day is next week. But how many of you know that it’s also CHD Awareness week? Better yet, how many of you know what a CHD even is? CHD stands for Congenital Heart Defect. Basically any baby born with a problem related to their heart has a CHD. Every year, for one week (Feb. 7 – 14), communities around the country try to raise awareness for these defects.

I don’t bring you this information as an outside observer, I have first-hand knowledge. My youngest daughter, Allison, was born in 2005 with HLHS (Hypoplastic Left Heart Syndrome). During her development in the womb, something caused the left side of her heart to not fully form. Doctors still don’t know what causes it and there are only three options after birth.

One, you can opt for a new heart for your child. But newborn hearts are scarce and the average life span of the transplanted heart is currently limited to less than 15 years.

Two, due to poor outcomes with available treatments in the past, no treatment was often recommended. This would, most certainly, end in the death of the child.

My wife and I choose the third, and most pursued option. Its a series of operations that start just a few days after birth and ending between 18 months to 4 years of age. This is, in no way a cure, but can keep the child healthy enough to get them into their teen years when a heart transplant is more of a reality.

Allison had her first surgery before she was 3 days old and her first open-heart surgery before she was a week old. She finished up her last surgery at around 20 months. The first two years were up and down and really hectic. But, the past year and a half has been really good. She has surely given her doctors a run for their money, but her firery red hair has kept her with us thus far.

I will leave you guys with these little known facts about CHDs. Keep them in mind next week as you remember your friends and family with children living with a CHD.

  • CHD is an anomaly of the heart that is present at birth. CHD’s cause one or more portions of the heart to develop abnormally.  At least 35 distinct forms recognized.(There is no known cause for CHD, although genetics is the number one suspect)

  • CHD is the # 1 birth defect and is the leading cause of birth-defect related deaths…
    (While it is the most common birth defect, it is the least publicized.)

  • CHD strikes children without regard to economic level, ethnic origin, sex, geographic location or religious beliefs.

  • 40,000 infants are born with CHD each year in the U.S.
    (Still, newborns are not screened for CHD’s.)

  • Some babies may be diagnosed before birth or at birth, some not until days, weeks, months or even years later. Sadly, too many are not diagnosed until after death.

  • Undiagnosed CHD’s and Childhood Onset Heart Disease cause many cases of Sudden Cardiac Death in young athletes.
    (Despite these statistics, teen-aged athletes are not routinely screened for CHD’s.)

  • There are 1.2 million children and adults with CHD alive today
    (CHD affects not only patients, but also entire families.)


~ by Chris on February 4, 2009.

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