Thursday, February 7, 2013

Congenital Heart Defect Awareness Week

In honor of the first day of Congenital heart defect awareness week I thought I would share my family's story, and things I wish I had known about heart defects.

Our Story:

Robby at 2 hrs old.
On January 11, 2008 at 4:10 pm, Robert Bruce entered the world. As first time-parents we were overjoyed and relieved to hear his cry. That night, we were ecstatic; we had a beautiful, healthy baby boy. 

We woke up early the next morning,  eager to hold Robby again. The nurse brought him in, then not long after came to bring him to his first check-up. A few hours passed and he still wasn't back yet, we began to be worry. Our questions were answered when a doctor came in introducing himself as a pediatric cardiologist. He explained to us that it was found Robby had a heart murmur. They weren't as concerned about that as they were the coarctation (narrowing) of his aorta, which would need to be surgically repaired. Our hearts sank, both of us in tears. The doctor said the survival rate for the surgery was 98%,but the 2% seemed huge! 

Just after surgery.
At just three days old he was waiting in pre-op. It was hard not being able to hold him, but the hardest part for us came when they took him out for the surgery. All we could do was wait, hope, pray and try to comfort each other. It was the most helpless we've ever felt. 

6 months old.
He got through the surgery fine and it seemed like he made a fast recovery; he spent a few days in pediatric ICU then got sent back to NICU. We were able to bring him home a week later. He needed regular visits to the cardiologist and had a scar that stretched from the middle of his chest to the middle of his back. Other than that he seemed like a normal baby.

Today with his little brothers.
I'm happy to say Robby's story doesn't end here. He turned 5 last month so it continues on. He still has a heart murmur and is followed up on annually by a cardiologist. Otherwise, he's a normal, happy 5 year old who likes tee ball, soccer, playing with dinosaurs and bothering his little brothers. 

What I wish I knew:

  • Statistics: About 1 out of 100 babies born will have a heart defect. They are the most common birth defects in the US. Had I known this information, I might have asked more questions about it at the time of my ultrasound.

  • If you or someone you know is pregnant the Children's Healthcare of Atlanta (  recommends to ask these 5 questions: Is the heart rate normal? Do you look at the arteries as part of your scan? Are the heart and stomach in the correct position? Do you see 4 chambers? Is the heart function normal? If something is detected early, you can be prepared.

  • The Children's Heart Foundation is a wonderful place to start for information. There you can get resource books, talk to someone who has already been through it and read or share stories about other children.

  • Social media is a wonderful tool!! The Children's Heart Foundation IS on Facebook. There you can get up to date information about the latest research, but most importantly connect with people who have been through it or are currently going through it. You can even connect with a local chapter.

  • Ask the doctor and nurses questions. Repeat the questions if you don't understand and take notes if possible. Also make note of the names of the doctors and nurses involved, especially if there's surgery. It's very easy to lose track.

  • You don't have to be strong; it's perfectly fine to cry.

  • You are NOT alone. This is the most important thing. So many people have been there; as I said, seek them out, use social media. Talk to someone.

  • Very little is known about what causes heart defects; do NOT blame yourself. I have been down that road. My first question for the doctor was, "Did I do something?". He said, "No, we aren't sure right now what causes it; sometimes it just happens." 

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