Sunday, February 9, 2014

Congenital Heart Disease awareness week

This week is CHD awareness week. Congenital Heart Disease is the most common birth defect in preemies, AND full term babies alike. It leads to more deaths of newborns than all other birth defects combined!

Though Blake went through a multitude of problems and obstacles I am one of the lucky ones whose child had a very minor and usually treatable CHD! He did however require surgery and it was one of the most terrifying surgeries he had. He was so small weighing only a little over 2 pounds when he had the surgery. The type of CHD that Blake suffered from made it where his heart could not regulate the blood flow between his pulmonary artery and aorta in his heart. Usually this can improve and close with time or can be present through your lifetime and not cause problems. However Blake's PDA was causing extreme problems, worsening his respiratory and cardiac status every day. The surgery that he had required the surgeon to enter through his back left side and deflate his left lung to suture close the open vessel between the two. Thankfully it was successful and he went on to improve tremendously after the surgery...actually being able to come off the breathing machine only a little over a week later. (That may seem long, but for those that know our story he had already been on the ventilator for over a month and they believed he would never being able to.)

We were on the lucky side of things. We witnessed a child in the NICU have the same surgery Blake did, and unfortunately he did not respond well. We witnessed multiple children's parents go through surgery after surgery. I have very close friend whose child had a more severe case of CHD requiring open heart shortly after birth. Unfortunately, despite the best care, their daughter became a very special angel. (A very special angel indeed...I can only hope she and Conor are playing, laughing and are the best of friends in Heaven)

CHD affects 1.8 million families in the U.S. Every1 in 100 children in the unites states are born with a type of CHD . There are a variety of different types. Although it affects so many individuals in the US there is very little resource out their for the families they affect!

The mended little hearts organization however continues to grow and provides so much information, they state "we hope to raise public awareness about conditions that affect babies. 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."

So let's remember those very special angels, the children/adults still struggling in the NICU, PICU, and in hospitals across the United States. Support and become knowledgable!!

I love someone with CHD and he wears the scars to prove it!

We couldn't be prouder to have this little man covered in scars! Each scar reminds us how big of a blessing our little miracle baby is!

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