Friday, February 8, 2013

CHD awareness week!

February 7-14th is CHD awareness week! I'm slacking a little in my blogging, we have had lots going on, but I was determined to update this week! Here is last years post! (

1 out of 100 babies will be born with some sort of Congenital heart defect.

That's 1%. 

Ella was that 1. (although with all of the other details to her heart defects she is more like 0.00001%)

Your child could be that 1.

I'm not trying to scare anyone, because I don't want you to live in fear. But thinking "that just won't happen to me, to my child" doesn't mean that it won't. I was completely shocked because I didn't even know what a CHD was. The first time I heard the term was when I was 21 weeks pregnant being faced with the harsh reality that this would be part of my child's life, and I was being offered the chance to end her life.

Often times defects are missed via ultrasound, even something as big as missing half a heart! If you are pregnant I beg that you ask for a pulse ox test on your infant within the first 24 hours of life. Despite all other tests looking good this is a great way to check for a heart defect. The great thing about this test is that it is painless, simple, and takes only a few minutes tops. Here's the thing, it won't be offered to you and won't be done without your request. I know it might put several of you out of your comfort zone to ask a nurse for a test that you don't know much about, and to have them act like you are stupid for asking, but Please do it for your baby.

I remember the day like it was yesterday. I walked into my ultrasound sick as all get out from my very hard pregnancy thinking that being that sick was so hard. Everyday I struggled to survive, little did I know life was a walk in the park compared to what was coming. This was actually my 4th ultrasound since we had almost lost her before. I, being a first time mom, and a little lot naive, all I could think about was if I was having a boy or girl. I didn't think about baby being healthy, after all we had checked on the baby so many times before I guess I assumed we would have already known if something was wrong. In fact we had already been specifically bragging on her strong heart that had been visible earlier then most.

The tech wasn't particularly kind, but I didn't mind, I was so excited! I remember her making some off hand comment about how annoying it is that parents come in excited about the gender never thinking about the health of their baby. That shot a feeling of guilt/fear right through me. I thought to myself "oh my goodness something could be wrong? Why didn't I think about that?" With the ultrasound revealing a HEALTHY baby GIRL we were thrilled to pieces. It wasn't until the next day that things began to unravel.

The next day I received a call, a nurse saying they had found an abnormality on the ultrasound concerning the heart and I was being referred to a perinatal specialist. The appt. would be in 10 days.

At that appt. we were told that our daughter had a Congenital heart defect called Hypoplastic left heart syndrome, essentially that meant she had only half of a functioning heart. She was given about a 75% chance to live with at least 3 open heart surgeries in her first 3 years of life. We were then offered to terminate the pregnancy, that hurt more then the CHD diagnosis. For a doctor or anybody really to find my child less then worth life because of an abnormality is just wrong. We knew she was worth fighting for! God had a purpose for her!

It was 2 weeks later that we met with a pediatric cardiologist who did an echo on our baby via my belly. After the echo was reviewed he and the perinatal specialist stood at the foot of my bed and discussed a bunch of things with one another about our daughter's heart. Jon and I just looked at each other and shrugged. Then the cardiologist hit us with some sort of description of what we already knew Ella had and then when on to say that they actually had found another defect that makes her extremely rare and extremely hard to treat. He gave her a 20% chance to survive.

It's been a long hard road since then, and many of you have followed the blog since then as well. But today Ella is 2 1/2 years old, She has had 6 heart surgeries, she has had oxygen, feeding tubes, cpap, ventilators, meds, tons of pokes... etc. but she is ALIVE and she is THRIVING! She has surpassed all the expectations and is continuing to surprise her medical team in Dallas.

So this week I desire to spread HOPE! There is life after CHD diagnosis... it's hard, but it's beautiful and oh so VERY worth it all! 


  1. Beautiful picture and inspirational story. Thanks for sharing!

  2. I am sure that when you look back at the last 2 1/2 years you wonder how in the world you did it all. You and Jon are wonderful and your Ella is precious. She is a strong fighter. Prayers!!!!!!!!!!!!!!


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