Baby's First Test

As some of you know a couple months ago I applied for a spot, through Baby's First Test and Genetic Alliance, in a Consumer Task Force made up of parents and advocates interested in Newborn Screening. I was very excited to learn I had been offered a spot to help advocate about the life saving tests that make up the Newborn Screening panel.

We have begun to share our stories and why we applied for the position on the Baby's First Test website. I just wanted to share my introductory blog post.

My name is Ruth Caruthers and I helped pass a law.
That’s right. Me, a housewife and stay-at-home mom to a two year old, helped get a law passed in my state of West Virginia. The bill, Corbin’s Bill, requires every newborn to be tested for heart defects using pulse oximetry. The reason for this is long and sad, but all of it is true.
My son Corbin Walker was born February 20th, 2011 at our local hospital via c-section. After his birth, the pediatrician told us that he could hear a heart murmur. We were told not to worry; heart murmurs are common and most don’t present a problem or go away after a short time. Since our hospital didn’t have the technology to check his heart, we were scheduled for an echo two days later in another town. It was there that we were told Corbin had multiple holes in his heart. The cardiologist was not in town so we were sent home with no more information and scared to death.
Two more days later, we were finally able to meet with a cardiologist and after another echo, he turned to us and said “You need to take him to the ER immediately or he will die.”
The next couple days were a blur as we rushed Corbin to the ER, he was put on a medication to keep his aorta from closing, and then he was transported to WVU Children’s Hospital to await surgery. After three heart surgeries, one heart cath, dozens of echos, hundreds of x-rays, and the scars to prove it; Corbin passed away on May 17th, 2011 just two days before he would turn three months old.
During Corbin’s stay in the hospital, I came across a blog, Cora’s Story, the told the emotional and heart breaking story of a mother who lost her 5 day old daughter to an undetected heart defect. That mother, Kristine, went on to pass a law in her state of Indiana, requiring every newborn to be tested for heart defects. After Corbin’s death, I decided that I was going to do the same. I was going to get a law passed in honor of my son and to prevent my experience from happening to other mothers.
My son is my inspiration and the drive behind my advocating for pulse ox, heart defects, and newborn screening. I was not a new mother when I had Corbin, I had a one year old at the time, but I had no idea about heart defects, newborn screening, or pulse ox. I did not know that these simple tests could save a life and I certainly did not know to ask for a pulse ox test.
That is the reason I am so interested in newborn screening and helping every state to save newborns. There are cheap, easy, and painless tests like pulse ox that are not mandated in every state, and they should be. Saving just one life is worth all the work it takes to educate mothers and residents across the country.
It is my goal to educate young, specifically first time teen mothers, about newborn screening and pulse ox. I’m so thankful Corbin’s Bill passed and now I don’t have to tell everyone they just have to ask for a pulse ox test, but my job now includes educating parents about newborn screening. I am so passionate about spreading awareness and advocating for newborns that I am willing to go the distance. I want to let every mother know of the lifesaving tests that exist for her new baby. 

If you haven't yet, you should visit their website and learn more about newborn screening and how it can save your baby's life. There are resources on what disorders your state tests for, what you should know while you are pregnant, or what to do when you receive your results.

It's a fantastic resource and I am so excited to be a part of it!

Corbin goes to the Governor

New update on Corbin's Bill!
Thanks to the American Heart Association we were able to get a signing ceremony for Corbin's Bill at the Governor's office!
Technically the bill became law Wednesday, April 4th at midnight since not all bills need the Governor's signature. But we were all super stoked none the less.

The Hubby and I, Monkey, Papaw and Mamaw packed into our car and drove two hours in the rain to Charleston yesterday. I was all smiles the whole way, imagining what it was going to be like and how I was going to feel. Just thinking that this bill passed in three short months brought tears to my eyes, not to mention the thought of the lives that will be saved!

We arrived early, thankfully it wasn't raining anymore. I took my millionth photo of the capitol building.

And the family.

And my boys.

Inside the dome, waiting.

After a short wait, we were able to go inside the Governor's office to wait for the ceremony.

Monkey was very excited. :)

My two other heart moms, Kathy and Michelle with their Heart Warriors, both named Jacob.

The pens!

The news.

The Governor! He begins with explaining each of the bills he will be signing. 

It went by so fast! I didn't know which camera to look at. 

The lady to the right of me is Delegate Bonnie Brown, one of the bill's sponsors.

She took the time to shake my hand and thank us for the work we did. I'm so glad she was able to attend the ceremony. It means a lot that she took the time.

Chuck introducing me to the Governor.

I got to share my story and thank him for signing the bill. He thanked me for helping bring attention to pulse ox and why it is so very important. He said if we hadn't, they never would have know, and that's true! People don't know about pulse ox till you tell them. 

Here he is shaking Monkey's hand. :)

And then after more pictures, some interviews, and a lot of hugging, we all went home! I have to say, I am SO proud of all of us involved in Corbin's Bill. And I want to say THANK YOU to every single person who sent emails and supported us along the way. YOU all got this bill passed and we truly could not have done it without you. I was told that our bill and the way we handled everything will be the new example for future bill campaigns. And that makes me so proud. :D

I was just interviewed today by WVVA news, so I will post that link as soon as it is up. Meanwhile, here is an article on the Governor's signing from channel 13. 

The little things

Dear Peanut,

We are getting closer to another holiday without you.

It doesn't bother me so much about the actual holiday, but more of the passage of time. It's a marker in the year that shows how much longer it has been since you gained your wings. I bought some decorations for your grave today. It was sobering to be standing over your grave, placing Easter eggs in a basket by your headstone. As I finished, stood up, and looked around me all I could see were more headstones with fresh flowers, Easter bunnies, and wind chimes.
I'm not the only parent missing my child during this holiday.

It's the little things that get to me more then anything else. It's the umbrella in the back window of my car, the umbrella I bought at Ruby Memorial during your hospital stay because I forgot to bring mine. It's the pregnancy announcements all over Facebook. It's your crib that you never got a chance to use that I had to sell because we needed the money. It's your bassinet and clothes sitting in a closet that I don't have the strength to get rid of. It's the t-shirts I bought while in Morgantown that I wore the last time I held you. It's the headphones I bought while in Morgantown and wore while waiting for rounds.
There are so many little things that are connected to you, surrounding me daily, that remind me of those tiny, fleeting moments we had together. Not all memories are sad, but that's all they are now: memories. I don't have the chance to make new memories and that is something I will never get over.

I'm thankful for those little memories, those flashes of a time when we were together. I just wish you were here to make more.

It's not all sad. When I do see those newborns in the grocery story, I smile, because I know you are helping to save lives. In about a year, those newborns I will see will have been tested for heart defects. All because of you.

And that makes me so very happy.

Missing you,