I was just directed to this blog by some other Congenital Heart Defect mom's on Facebook that I follow. It is heartbreaking. There are no other words for it. I hope this story on her blog is enough to make everyone see how common CHD's are, and how deadly they can be if not detected. Please read it, it's short and only takes a few minutes to know her whole story. It's important.
I have quite a few friends and family having babies in the next few months and I am constantly praying that they will educate themselves and know the signs of a CHD, I'm praying they will keep in mind that CHD's are not always detected before birth as they should be.
I also have quite a few friends and family who know our story and still don't believe it's such a big deal. I'm sad by how many of these people we know and love don't understand just how serious Miss K's CHD is. I try my hardest to help them understand that if Miss K had not been born with her heart in SVT from the beginning we would not have known she had PJRT and we never would have watched for the signs and symptoms, even knowing she had SVT at birth if I hadn't of listened to my instincts, if I had sat by and said "she's just being a sleepy newborn", if I had put off taking Miss K to see a Doctor even just a few hours longer she would not be here with us now. I cannot imagine life without Miss K. Every day I think about Miss K's first week of life. Every day I read at least one new story (new to me anyway) about a CHD child. Every day I am amazed at how clueless I was about CHD's before Miss K.
This could happen to anyone. It does happen to 1 in 100 families. It is common. It can be deadly. Please educate yourselves. Be prepared. Know the signs and symptoms. And please, please, please don't trust that all your prenatal ultrasounds were right and that your baby is perfect in every way. It is common to miss a CHD in utero, it's also quite common to miss a CHD after birth. Too many babies are sent home with an undetected CHD.
I love the ideas Cora's mom has posted on her blog about educating yourself about CHD's during your pregnancy. Know all about them and study them as much as you will study SIDS and everything else you will study before your baby comes. My favorite thing she mentions is to request, yes seriously REQUEST, that the medical staff test your baby with a Pulse Ox 24 hours after birth, you don't need a reason and you don't need to make up excuses. It's an easy test, all they do is put a little monitor on your baby's foot and watch the numbers. If, IF, there is anything wrong with your baby's heart this should show some sign. I for one plan to ask for this when we have our next baby, we WILL be prepared and ready for a CHD.
Ok, here is Cora's Story. Be prepared, you will cry, especially if you are a parent or parent to be.