by a Proud Mommy to Warriors.
CHD Awareness to me means telling people I am BLESSED with 3 beautiful children, two of which were born with a congenital heart defect, and have SURVIVED 8 surgeries between the two of them (5 surgeries being on their delicate and beautiful hearts).
CHD Awareness to me means telling people the doctor’s said my boys may not see their first birthday, let alone their first hour of life and NOW my “CHD boys” are 7 years old and 20 months old.
CHD Awareness to me means telling people to get their echocardiograms done while they are pregnant for peace of mind, and having a game plan set ahead of time with the doctors, if they do catch something, because my 20 month old may not be here today if his condition was not caught when I was 20 weeks pregnant.
CHD Awareness to me means telling people my children are “Warriors,” if people ask about their scars at the pool, and seeing the pride in my son’s eyes as he shows off his scar with pride and says “he has a matching scar like his brothers”.
CHD Awareness to me means finding wonderful and supportive “CHDers” and “heart parents” who you can sit down and have a conversation with and feel you could “hold your own in a heart conference” and learn from each other and are there for each other when we have a breakdown and need to vent, because not everyone understands.
CHD Awareness to me means telling people facts like “About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation” or “This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation” and seeing people react from not being aware.
CHD Awareness to me means telling people my kids are great, wonderful, stupendous, but NOT CURED.
CHD Awareness to me means watching my 7 year old go to school with pictures and a smile on his face and do a show and tell presentation on all he has been through while only 8 months old and tell people, “Now I play baseball, basketball and I am the Math King in 2nd grade.”
CHD Awareness to me means doctor’s appointments, echocardiograms, EKGs, heart catheters, being a little more overprotective, watching my baby have to have monthly synagis shots during the RSV season, watching for blue spells, taking all bumps, bruises, coughs as a possible sign, and LISTENING to my son if he feels something that just doesn’t seem right.
CHD Awareness to me means getting the word out each and everyday, whether it is telling my sister about echocardiograms, or telling my friends about oximetry tests, or writing a letter to Oprah, or doing a “Walk with the Heart of a Child” through the mall of Las Vegas, or watching my son do a show and tell. CHD Awareness is a part of our everyday life. We didn’t choose this life, it chose us. We are a family of five who try everyday to live a normal life and allow our children to participate in sports or play video games or do math competitions or just go to the park and run around and just enjoy life. We hug each other tighter, we love each other stronger, and we don’t take each day for granted, because the Lord gave my beautiful boys a second chance, in turn giving me as a mother as second chance, and we are taking advantage of these moments and embracing each and every one of them.
(NOTE: This is USA Statistics not UK)
Written by Naomi Anderson
To read Naomi’s personal story click here.
Naomi Anderson has given CHD-UK persmission to use the photographs for this page.