I found out I was pregnant three months after my first son was born. It was a complete shock, and honestly I was terrified.

I had no idea what was to come.

Delivery day: My water breaks, but I’m not in labor so I’m taken for my second C-section. After a smooth delivery and surgery, I get to meet my second son, Corbin Walker Caruthers. My very first impression was he was really red, and he looked like a little old man. But I smiled; I was already imagining the joy he would have growing up with his older brother.

Later that day, they tell us they hear a heart murmur.

Shock doesn’t describe what we feel. We instantly turn to the internet to look up what exactly a heart murmur is and if we should be worried. Everyone tells us not to worry; it’s common and will most likely go away on its own.

But it won’t.

4 days later and one of the worst days of my life: we learn Corbin has life threatening heart defects that will require heart surgery. He needs to be rushed to Ruby Memorial to have heart surgery. He can’t go home with us.

I could on to explain the heart surgeries, the intense feelings you go through when waiting through an 8 hour heart surgery on your newborn, the needles, the tests, the IV’s in your sweet baby’s head, the agony of hearing your son isn’t getting better…I could go on and on. But I will just say I pray; I pray every day of my life that another parent will never have to go through that pain. That complete AGONY. Those knee-buckling emotions of “I can’t do this”, “Why me God? Why my baby?”. It is a terrible thing to see your child that sick.

We prayed. And we believe in the power of prayer. Corbin got better! But then he got worse. Much worse. His third heart surgery was necessary but it almost killed him on the table. It took three hours, after his surgery was finished, to get him off the bypass machine. It was a very rocky three hours.
Corbin made it through surgery, but he would not live to go home again. Our baby died. May 17th, 2011, he was two days shy of being three months old. The PICU floor cried with us as the rain poured outside. The doctors gave us hugs as they wiped away their tears.
But his story isn’t over.

Three months after he passed, I met with two heart moms and together we teamed with The American Heart Association to introduce a bill. Corbin’s Bill. It would require every single newborn in the state of WV to be screened for heart defects. You would think this simple, cheap, and painless test would have been mandatory already, but it wasn’t.

We were told to expect a 5 year process. It is a health bill after all, and you tend to run into a lot of opposition when you try to tell hospitals what to do. We were expecting the bill to bounce back and forth between the House and the Senate, adding changes to the bill each time and thereby pushing the time farther and farther back. But that never happened! We had the smallest opposition against the word “pulse ox”, in case a newer, better technology came along to detect heart defects. But with some smooth talking, our advocate within the American Heart Association convinced them that it was just fine and our bill moved on!

We received great support within the legislative system. When I spoke in front of the Women’s Caucus, I was surprised by their surprise that pulse ox wasn’t mandatory already. Even the Governor of WV thanked me for letting him know about pulse ox and how it saves lives. He didn’t know about it before and was shocked himself to hear it wasn’t mandatory.

Support from the community was overwhelming. We took full advantage of the American Heart Association’s “You’re the Cure” network which allowed people to easily sign up with just a name and an email and receive updates about the bill and calls to action. With an easy to navigate system, supporters could easily forward emails on to legislators at specific and orchestrated times, which helped boost the weight behind our bill. I witnessed a legislator during a voting session speak at the podium in front of the House of Delegates and say “I’ve had well over 500 emails about this bill, let’s just pass it”. I almost yelped out loud! Our strategies were working!

My advice to parents trying to do the same thing is: you can do anything with the power of social media. Take full advantage of it! Here is a list of the most important things to remember:

1. Make it as easy as possible for people to help. You MUST assume people are lazy. I’m sorry, but it’s true! If your local AHA is supporting your bill, use their “You’re the Cure” network because it is short, simple, and to the point. You are more likely to reach more people if all they have to do is click!

2. Be nice! Legislation is truthfully more emotional than you would think. You have to pick your sponsors carefully because if you pick a sponsor none of the other legislators like, they won’t join in. Never take the condescending or hateful approach. I have been told about bills that have yet to pass, after 5+ years, because the supporting organization is too pushy and demanding. It’s ok to have the tearful approach, like we did. Bring them down to your level as a parent. Talk about your child, don’t be afraid to cry or be emotional. They are human too, don’t forget that.

3. Use social media for everything. Facebook, Twitter, Google+, Pinterest, Instagram, Blogger, WordPress, Tumblr; use them all! Get your story out there on as many platforms as possible. Don’t forget the major websites either! Post on BabyCenter, guest post for other bloggers, contact “big bloggers” like Scary Mommy to see if they’ll let you guest post. Reach out to those who already have a huge audience. The worst they can say is no!

4. Repeat yourself. If you manage to get a spot on TV, try not to go into too much detail. I once had a TV interview with a reporter for an hour and half, only to have her focus on me crying and not once say anything about CHD or how common it is. Plus the segment only lasted a minute and a half! Reporters will not remember everything you said. Write it down for them. Be short and to the point. Repeat the same 5 facts over and over. It’s ok if you do cry! But remember not everything you say will go on TV. Provide them with all the information they need to know on paper so you are sure they get the facts right.

5. Speak up. Don’t be afraid to approach people out in public. It always made me so nervous, but I would approach pregnant women and tell them about pulse ox, the bill, and how they need to ask for and about the screening. Hand out fliers, contact the newspaper, radio, and television stations, print out 5×7 postcards and leave them everywhere you go: gas station, doctor’s office, and restaurants. Use every opportunity to spread the word!

We were very lucky. Corbin’s Bill passed unanimously after only three months. Out of thousands of introduced bills, only about 300 made it through, out of those, only 3 were health bills, and of course, one of those was Corbin’s Bill. We had such a success, the American Heart Association sent me to Ohio to help them start up their pulse ox bill and share our strategies.

The bill is now implemented state wide and every single newborn is being screened with pulse ox because of my son’s short but powerful life. He lives on through this bill.

I hate that something so tragic had to happen in order for something so wonderful to happen, but I am proud of what we have accomplished in Corbin’s name. There is also now a non-profit established in his honor, The Corbin Story Fund, that raises money for CHD, pulse ox, and newborn screening awareness and education, as well as supporting the local community through a child loss support group.
Corbin has changed my life forever, and for that, I will always be thankful.

Read Corbin’s full story at: www.thecorbinstory.com
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Follow on Twitter and Instagram at: @Corbinsheart
Contact Ruth at: thecorbinstory at aol.com