You may not know that Valentine's Day is also Congential Heart Defects Awareness Day. Congenital Heart Defects (CHD) are birth defects of the heart that affect millions of newborn infants and children worldwide; a killer that claims thousands of lives every year. Eight of every 1000 children born alive will have some form of congenital heart defect. On February 14th, A DAY FOR HEARTS, a concerted global effort is made to heighten awareness of this deadly group of diseases.
I am a heart mom. Wow - just writing that makes my heart break a little. Even with extensive 3-D ultrasounds to detect possible Cystic Fibrosis at 7 months in my pregnancy, (which she didn't have), no one detected my daughters L Transposition, Epstein's Anomaly, or WPW. At her 2 day well check a thorough and caring pediatrician noticed a murmur and suggested we check it out. I was a little scared, but comforted by the pediatricians reassurances that it was likely no big deal and that many babies are born with murmurs which they eventually outgrow. (I think she knew, by the sound of the murmur something terrible was wrong, but she tried not to alarm us.)
Sitting in the cardiologists office 2 weeks later I was left staring in tears at model hearts and graphic depictions of what I then believed was a death sentence for my baby. I didn't want to touch her, hold her, or love her because I was going to lose her. However, we have been overwhelmingly blessed. Her heart has not changed much in the last years of her life and surprisingly she has not required any medication or surgeries yet, though they will be coming.
I can't tell you how many times I have climbed into bed next to her while she was sleeping and weeped at her side. Weeped for the broken heart I gave her and for not being a better mother.
I try not to coddle her, but treat her as a normal child with an extra special heart. We've explained to her what will happen in simple terms and that one day her little broken heart will need to be fixed. All that concerns her for now is that she can be asleep when they fix it. I will cry next to her then too.
I too am a heart mom and really glad that you wrote about this here. You should check out Intermountain Healing Hearts. Its a local support group fro children and their families affected by congenital heart defects. It is a great group and we are actually having a Heart Mom lunch on April 30th that is free to come to. If you'd like more information you can email me.
ReplyDeleteellingerfamily [at] gmail.com
P.S. I love what you do! Thanks for helping us save so much money!