Congenital Heart Defect Awareness

February 7 – 14, 2010 is Congenital Heart Defect (CHD) Awareness Week. Did you know it is estimated that 40,000 babies are born in the United States every year with congenital heart defects? Also, there are at least 35 different types of heart defects. All are rare, but some are more well-known than others. CHD Awareness Week is sponsored by the Congenital Heart Information Network (C.H.I.N.) which is an annual grassroots campaign that strives to inform the public about CHD.

Recently, a mom friend who has a beautiful baby with a complex heart defect requested that I help educate people on what you should not say when making conversation with a parent of a complex heart defect child. She has pulled together feedback from several other heart moms, so please take note!

  • “We were considering having another child; however, we are on the fence because of the fear of having an unhealthy child.” People need to keep their thoughts to themselves when it comes to deciding not to have children for fear that they may have a special need…
  • “Why do you hook your child to tubes, she is too big to be a preemie?”
  • “Your child is going to be fine. One day you will look back at all this and laugh.”
  • “Why are you so sad? You need to learn to cope.”
  • “Good thing he/she is going to be your last baby.” People assume heart moms will not have additional children in fear of having another baby with a heart defect.
  • “My neighbor’s sister’s cousin’s friend’s baby has a hole in her heart”. DO NOT do that! Do not reference some strangers kid just so you can feel relevant. It is insensitive to lump all of our children into a group when I would go out and do unspeakable acts to get my kid one of those holes that will probably go away.
  • “Don’t worry.” I’m his mother, that is my job!
  • “You’re pregnant?” One mother found out she was pregnant the day her son had his Glenn (reconstructive surgery at 3 to 6 months of age). It wasn’t a planned pregnancy and the mother was scared to death he might also have a congenital heart defect. The new baby is perfect and yes the mother wants more. And yes, people should mind their own business!

Even if these types of comment are spoken in an innocent manner, the words seem to devalue the lives of these children. Would a parent not love their child if he or she became sick? Certainly not! Also, several of the moms mentioned how people would stop and stare at their heart babies (perhaps because of oxygen tubes or the way the babies were breathing). This breaks the mothers’ hearts.“One can only hope that the world won’t be as cruel to our children as they are to our children’s parents.”

One mom’s best advice is “you can tell me your sorry because so am I. You may ask as many questions as you want because I want to educate you about my child. And you may tell me that you will pray for my baby and my family because I wish for God to hear my child’s name daily. Beyond that – the best thing for you to do is go home and take care of your children because that’s exactly what I’m going to do.”

Finally, one mother summed it up best, “I would not wish this journey on anyone, however I would not change a thing…My child brings such joy to our lives on a daily basis. I just wish that people would think sometimes before they speak.”

Parents of children with CHD have admirable strength! Please hear these mothers’ thoughts and be more considerate!

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