Congenital Heart Defect Awareness Week February 7-14, 2013

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Today begins Congenital Heart Defect Awareness Week February 7-14, 2013.  Yesterday my son received his Proclamation for Congenital Heart Defect Awareness Week from our Governor.  He's a very proud boy!




February is a very special month not just for Valentine's Day and all the fun heart shaped things it brings, it's also a week that I hold near and dear to my own heart.

My 4 year old son was born with Hypoplastic Right Heart Syndrome (Half a heart) and other complex defects. Imagine during your ultrasound having the technician run out of the room just to have the doctor appear and say I have good news and bad news.  The good news is you're having a boy the bad news is he only has half a heart.  My pregnancy was extremely stressful and more importantly scared everyday of the unknown.  Once my son was born he was immediately handed off to the surgeon team and prepped for surgery.  At less then a day old he had the first of three surgeries, the second at 6 months old which he suffered a right frontal stroke and has made a complete recovery and the third surgery at 2 years old.  He's completed all his surgeries until the time comes when he may need a heart transplant.  If you look at him know he looks perfectly fine, he takes daily aspirins, yearly visits to the cardiologist and loves pirates.  The only thing that will forever stay with me is the doctor saying "Enjoy the calm before the storm."  Our lives have forever changed, never take anything for granted, live life to the absolute fullest.  Everything is worth a smile from his face!  (My logo is my sons t-shirt we wear during our annual heart walk)

What is Congenital Heart Defect?

CHD Awareness Week is an annual awareness effort to help educate the public about Congenital Heart Defects. Participants include individuals, local support groups, national and local organizations and congenital cardiology centers throughout the world!

Why is it important to me?

  • Congenital heart defects are the most common type of birth defect in the United States, affecting about 40,000 births per year. Approximately 100-200 deaths each year are due to unrecognized heart disease in newborns.
  • In the United States, hospital costs for people with a heart defect were about $1.4 billion in just one year.
  • Despite the fact that CHD affects approximately 1.8 millions families in the U.S.,  a relatively small amount of funding is currently available for parent/patient educational services, research, and support.
  • By sharing our experiences and providing information, we hope to raise public awareness about conditions that affect approximately 40,000 babies each year in the United States alone.
  • It is our sincere hope that efforts to educate the public will result in improved early diagnosis, additional funding for support and educational services, scientific research, and access to quality of care for our children and adults.
  •  If these facts scare you, there is hope! As medical technology improves, people with CHD's are surviving and living longer! There are currently about 1 million adults living in the United States with CHD's. 

Remember to take care of your heart, hug and love your loved ones (especially your children) and wear red to show your support during this week!

More information can be found at www.tchin.org and www.heart.org

P.S. Don't forget to wear Red beginning Friday, February 1st!

Nellysg
HeartMom
Nellysg posted Jan 28, 2013
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9 Comments
dealwagger
I wish you and your family all the best! A woman I used to work with is undergoing treatment for a congenital heart disease as well; it has been very overwhelming for her. Red is my favorite color so what a great way to wear it! :) Best of luck to your son and your family!
dealwagger (rep: 10.2k) posted Jan 28, 2013
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Nellysg
Thank you so very much for your sweet words of support!
Nellysg (rep: 70.9k) posted Jan 28, 2013
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alecupope
I know I am repeating what dealwagger said, but I wish you and your family the best. nothing that we say can make your life easier, but your story should make everyone live life at fullest. you never know what tomorrow brings...material stuff is of no importance...only the love of the family and the smile of the loved ones can bring some comfort...my warmest thoughts go to you and your family.
alecupope (rep: 15.1k) posted Jan 28, 2013
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Nellysg
Thank you also for your sweet comment... I truly appreciate your warm thoughts! I'm speechless as to how truly honored I am to be his mother but also honored that a community can express their support through a simple comment, like, or view. Thank you all!
Nellysg (rep: 70.9k) posted Jan 29, 2013
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WideAnglePhoto
Your son and your family are in my prayers :) It really is indescribable when your children are in danger and you can really do nothing about it. I wish you all the best for the future endeavors, and it's awesome that you take and cherish one moment at a time. I'm wearing red this month in honor of your son. Heart Hugs.....
WideAnglePhoto (rep: 31.3k) posted Feb 04, 2013
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Nellysg
You described it perfectly... The feeling is hopelessness... It's the worst feeling in the world.. I'm grateful to the Hospital and doctors for catching his diagnosis so early and he's here today enjoying life to the fullest. Thank you so much for your thoughts and words...
Nellysg (rep: 70.9k) posted Feb 05, 2013
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Nellysg
I edit my posting above to add the photo of the Proclamation for Congenital Heart Defect Awareness Week from our Governor... My little guy is proud!
Nellysg (rep: 70.9k) posted Feb 07, 2013
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Nellysg
Today concludes the awareness for Congenital Heart Defect Week.... Thank you all for your support! Hope you enjoy your Valentines!
Nellysg (rep: 70.9k) posted Feb 14, 2013
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c143696
++ niche
c143696 (rep: 9) posted Feb 19, 2013
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