I was de-friended last week on Facebook. This isn’t the end of the world. But the reason irritated me. It was from a pregnant “friend” and her response was “Thanks for trying to scare me into believing this could happen to my unborn child. I’ve been told he’s healthy and he is. I trust my doctors.”
As CHD families, we are not trying to “scare” anyone. It’s awareness. It’s hoping for the best but being prepared for all possibilities. You don’t want to get caught blind-sided. My family had 17 days to learn, understand, comprehend and realize the impact of congenital heart defects. But on a realistic note, you can ask all the parents of CHD children, and half were told their child was healthy. CHD’s are not to be taken lightly. It’s not a simple fix and then being sent home. It’s a constant worry. It’s your heart. Please know the facts and always ask for a pulse ox to be done on your newborn child. It’s non-evasive and simple. We’ve all had one done and it’s just as easy for a newborn. It could very well save your child’s life.
Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
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
Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome
4-10% born with CHD have Atrioventricular Septal Defects (one of Jonah’s defects)
8-11% born with CHD have Coarctation of the Aorta (one of Jonah’s defects)
9-14% born with CHD have Tetralogy of Fallot
10-11% born with CHD have Transposition of the Great Arteries (one of Jonah’s defects)
14-16% born with CHD have Ventricular Septal Defects
Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes (Think about: we've all read those stories where a 17-year old collaspes and only to find out he/she had a heart defect.)
AND ONE OF THE MOST IMPORTANT FACTS:
It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes
"FEAR NOT ILLNESS. THIS PLACE OF CARE, LOVE, AND HOPE IS FOR YOU" I read these words everyday as I walked into Arkansas Children's Hospital. They are engraved into my heart and my mind and I still believe these words.
Oh I am so very sorry. What a sad thing to say to someone, when you are just trying to teach, not scare!! I think in some way, people are really scared to admit, or think their "perfect" baby is sick. I feel like the most negative person alive and have lost alot of friends over it too, it's hard to live through and go through what we as heart moms do. Makes me sad for this person, that they don't want to know others realities, and the possibility everything isn't always "perfect" and no CHD's are not the only thing that doesn't make them perfect, so many other factors are out there!!
ReplyDeleteI am sorry, makes me so sad!!
Thank you Wendy. I am expecting my first great-grandchild. I will surely tell my granddaughter about the pulse-ox test. I am surprised that it is not a mandatory procedure when a baby is born.
ReplyDeleteYou just have to do your job and not care what people think of it sometime. You are courageous. You didn't just go through it... you are trying to help those still coming through. God bless you... and all the CHD babies!
first of all, i LOVE this baby pic...is it jonah? just love that happy baby face! ;)
ReplyDeletesecond of all, especially if this is a first baby (your friend), i can understand in a way why this happened. fear and immaturity. i don't mean that in a mean spirited way either. of course it is scary to think something might be wrong with your baby. and some persons just are not far enough down the road to handle "awareness" i guess is a good way to put it.
as much as chd awareness affects us, it simply does not effect the majority. my sweet baby is deaf...talk about a minority! for the most part, until it becomes a personal part of someone's life, well, everyone has their own issues, does that make sense? yours is chd, mine is deafness, another mommma might have a baby with leukemia...some of us have learned (the hard way) to open our hearts and minds to defects that do not personally effect us. others haven't learned yet. :)
i still love you! :) for reals! :)