Friday, March 12, 2010

Friday's Featured Cause: Heart Defects - the story continues

I realized after the party that a lot more people are affected by heart defects and don't know where to turn.  Many comments wanted more information on statistics, support, and even little man's story. 

All the questions and concern inspired me to start a Friday feature program of my own.  On Friday's I will feature causes and the blogs that support them.  While many of the posts will be about heart defects (as it is so close to my heart) - I will also post about other causes/blogs that need to share the spotlight. 

If you are have a cause that needs shining on, Fill out my form! /short questionnaire and you will be featured.

Today I want to continue Little Man's story for all of you to read. 
We last left off with the introduction that changed my life.

After the doctor left, I called my husband.  I tried to be calm, but I needed him so badly.  I needed him to come back to us.  Unfortunately life doesn't work that way.  Life moves on, even when you want the world to stop.
The twins had to be picked up from school, I had to listen to a lactatian consultant. Things just kept happening.  Dear Hubby jumped on the internet as soon as he got to the house, waiting on the twins to get off the bus.  Yes, internet was against doctors orders, but we wanted all the information we could get.

My husband researched all he could before he came back to see me and Little Man.  Little Man was doing good, the hospital put off all regular procedures (immunization, etc) until the next day to avoid anymore trauma to him.  I continued to hold him for all life was worth.  He looked so big and healthy (9lb 4oz), I couldn't believe that deep inside there, something was wrong with his heart.  HIS HEART, the one do or die thing that we all need to survive.

As Dear Hubby and I watched our son, we decided not to tell anyone.  We wanted more information first.  We didn't want the looks and stares of others, we wanted him to be treated like a normal child.  As we left the hospital, I felt like we were going home to a whole new world.  As the twins we doting on their new brother, I was spending every waking moment on the computer - I had to know it all.

Some of the information was great, I learned more about the heart in the next few days than I ever wanted to know.  It is amazing how many parts of the heart there are, and how many defects are out there.  Did you know there are over 40 different types of heart defects?

Here is a picture of a regular healthy heart, and below it is how ebstein's anomaly changes the heart.
Image courtesy of tour2india4heath

I also learned that there are a lot of other conditions that can come with a heart defect.  Children can develop arrhythmias and their heart rate has to be checked often. 

I learned everything I could, researched every possible outcome and then made a page long list of questions for the pediatric cardiologist.  We would be going in for another echocardiogram within the week and I wanted to be prepared.  How do we know if is oxygen level is dropping? What is the difference between a regular colic child, and a problem with my son because his heart hurts? Would our son ever be able to play sports?  Would he have to have surgery?  How long before surgery?  What did we need to protect him from?  What would make him stronger?  How often should I check his heart rate?  How much is too much sleep? and the list went on.

We were very lucky with our son.  His heart defect was found by hearing a slight heart murmur.  Most heart defects are not found this way, many are not found until symptoms arise, and then it is too late.

Pulse Oximetry is a very simple, cheap, non-invasive way to screen for birth defects.  It has the chance to catch them up to 50% of the time. It could save lives - like Cora's. Yet most doctors/hospitals don't do it.

This is where you can help!!!

Parents across the country have starting petitioning their state governments to make pulse ox screening mandatory.  If you live in one of these states - please go sign their petitions, or write the representativesIf you or someone you know is giving birth, make the request for pulse ox screening.  It could mean a world of difference!!!
Missouri Residents: Please help pass Chloe's Law
Nebraska Residents: Read this Bill and the write in support of it!

One of the other problems I found, was the difficulty in finding support about heart defects, luckily I've come a long way.  If you are a heart mom or want to know more about CHD's, please go check out this new site by a fellow heart mom.


  1. What I find so amazing is that doctors and health professionals don't want to pre-screen BEFORE hand. They do crisis management where you or your child have now already experienced pain or troubles and damage has been done. OY! Such a great article you did on this woman. Thank you for sharing.

  2. Your blog is amazing and so inspriational. I have no immediate relation with CHD but I had a heart scare in highschool where I went into cardiac arrest. Since then I too have a soft spot for those with heart problems. Thank you for your blog and your awareness to others out there!

  3. It's really great that you can use your blog to do so much good. I hope that your Friday feature catches on.


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