CHD Awareness Week

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scan0045Do you know about congenital heart defects (CHD)?  Did you know that February 7-14 is the week dedicated to making people more aware of these defects?  It is the last day of that week and I’d like to take a few minutes to dedicate a post to this issue.

Every year approximately 1 in 125 children are born with a congenital heart defect.  These range from conditions that include issues where there are holes in the heart or valves leak to more serious conditions where the plumbing for the heart is completely hosed.  With some of these conditions, children can lead relatively normal lives.  Other children aren’t so lucky and may spend weeks and months in the hospital with the possibility that they just won’t be able to outlive their defect.

I care about this because one of my children was born with CHD.  My daughter, Madison, was born with truncus arteriosus (another link).  Truncus arteriosus only affects 1-2% of children born with CHD.  Due to this condition, where she should have had an artery that went to her lungs and body separately, there was only a single artery.  It is, unfortunately, not on the end of the spectrum where children can lead relatively normal lives.

As a result, Madison needed to undergo open heart surgery.  At 5-weeks old, she went to Children’s Hospital in Minneapolis, MN.  Her surgeon did a phenomenal job and completed the surgery perfectly.  Unfortunately, it was more than she could take and she passed away the morning after her surgery.

After 10 years, you might wonder why I bring this up.  I do this because I’d like Valentine’s day to mean something a little less commercial.  There are many children in the world and our communities with broken hearts.  Often times, money donated to study CHD are diverted to studying heart disease.  While heart disease is a worthy cause, it is often more a condition of life style, than a result of being born.  Children lack the voice to speak up for themselves and only awareness will help provide that voice.  If you have the time, please take a few minutes to become aware of CHD and share it with a friend.

  • phani

    Madison was a lot of things to many people and will be missed tremendously.

    You are in our thoughts and prayers during difficult times.

    with regards,

    Phani

  • Janelle Strate

    Madison you are my little angel! I miss you terribly but I do feel you watching over us!

    Love you,

    Grandma Strate