CHD Awareness: Diagnosis

This post is going to have a little less facts and a little more of my (layman) understanding.

Some CHDs are diagnosed in utero, when the baby is sent for what I have always known as the "anatomy scan."  This is done at approximately 20 weeks.  They check the organs, baby's growth, and this is often the ultrasound where they can tell you the gender of your unborn baby!  One of the things the specifically look for is to see if the baby's heart has all 4 chambers - so in the case of some CHDs, they may be able to pick up an abnormality.

From what I've read on these amazing mommas' blogs, if something is detected, the babies are sent for a fetal echocardiogram to get a better idea of what's going on.  While they may not pin down the exact diagnosis until birth, this is enough to give them an idea of what they will be looking at and an idea of treatment after birth.

Only after I started reading these stories did it hit me - when we were having Brooke, they couldn't get a good picture of her heart at that first ultrasound because we had it super early at 17 weeks.  At the time, they told me that it was because it was so early and she wouldn't turn around - I remember saying to Jim in passing that I hoped everything was OK, but I never once entertained the thought something serious could be wrong.  I was chatting with other mommas on the What to Expect (WTE) website and many of them were needing to go back a second time, too - so it was no big deal.  (FYI: We had to go back 4 times.  The first time, they couldn't get heart/spine.  The second, still couldn't get spine.  The third, couldn't get kidneys.  The fourth, they finally got everything  We must have a stubborn one ;-)  ).

It's a proven fact that the earlier the diagnosis, the higher the survival rate.  (March of Dimes). 

My take on this is that these babies have the best chance of survival if they're diagnosed before birth so the proper treatment/tests are arranged to be in the labor room/available upon birth.  And yet, this isn't the case - Sometimes the diagnosis isn't made until days, weeks, or months after birth - sometimes the diagnosis isn't made until adolesence or adulthood.  (March of Dimes)

There is a simple, non-invasive test that can be done at birth that, while not foolproof, can certainly give an indication there is something wrong with the baby's heart - a Pulse Ox test.  Everyone knows what these are - for adults, it's that really annoying thing they clamp on your finger when you're at the hospital.  For babies, it's simply a band-aid looking thing they wrap around the babies toe - that's it - and it tells them the amount of oxygen in the blood.  The number (in a heart healthy baby, they're looking for close to 100) will be lower in babies with heart defects because not as much oxygen gets into the lungs.  (Again, this is my very layman understanding and may not be completely accurate - if you have questions, you should ask your healthcare professional!)  It doesn't hurt - Brooke had this at the ER a couple of weeks ago and it didn't bother her one bit.

There are bills in some states regarding making pulse ox screening mandatory upon birth.  If yours is one, please become involved - write to your legislator in support of the bill.  The life saved someday could be the life of your baby!

The first Momma's story I want to send you to today is Logan's mom.  Logan was diagnosed after birth with his CHD.  This week, his mom is featuring interviews each day with other heart moms and heart dads - and some of these stories are about kids who were diagnosed after birth rather than in utero. 

And, I have to warn you, this story is heartbraking, but I think it's an important story to share.  Go read Cora's story.  Cora passed away at home in her mother's arms from an undetected CHD - only 5 days after being born.  Had she had the pulse ox test, she could have received the treatment she needed.