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 20^th, 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 17^th, 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!