CHD. Some may say coronary heart disease but to me it means Congenital Heart defects: heart defects a baby is born with. Most have no known cause, some are caused by a genetic disorder, and some by drugs or alcohol.
With my son, they were caused by William’s Syndrome- a genetic disorder that deletes one little part of one little gene and affects the elastin in the heart, causing defects. My son’s defects were many and quite serious. He was five days old before we realized just how much, this is his story…
On February 20th, 2011 I gave birth via C-section to a tiny and wrinkled baby boy named Corbin Walker. My entire pregnancy was normal with no complications so it was shocking to hear the pediatrician tell us “he has a heart murmur.” We tried not to worry too much as everyone around us told us that heart murmurs were common and most went away. Since our hospital was not equipped with the technology to check his heart, we were scheduled for two days later in another town to have an echocardiogram (ultrasound of the heart).
The day of our appointment was cold and dreary as we drove the hour to the ultrasound office. Our tiny newborn was asleep in the back seat with no idea that anything was wrong. Once we arrived and got settled in, the ultrasound technician was quiet, too quiet. My husband asked “So, do you see anything?” She hesitated, and then said “I see holes.” My heart dropped as the tears started to flow. She wasn’t allowed to tell us anything else as the cardiologist was not in town. We were rescheduled in another two days to meet with the cardiologist then sent home with no more information.
The day we finally got to see a cardiologist, he took a look at the echo machine, then 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 Corbin was rushed to the ER to be put on medication to keep his aorta from closing and then from there, transported to WVU Children’s Hospital to await surgery. Turns out Corbin had multiple heart defects that were life threatening if not treated within days.
For the next three months he would endure three heart surgeries, countless procedures and IVs and would have the scars to prove it. On May 17th, 2011 two days after his third heart surgery, and two days before he would turn three months old, Corbin passed away.
During my stay in the hospital I came across a blog and in it, the mother spoke of how her daughter died in her arms while breastfeeding at 5 days old from an undetected heart defect. That mother went on to pass a law in her state of Indiana requiring every newborn to be tested for heart defects.
I said to myself “I can do that.” After Corbin’s death, I made it my mission to spread awareness about heart defects and how they affect 1 in 100 babies and how a simple, cheap, and painless test called pulse oximetry can help detect them. Most heart defects have no cause and they cannot be prevented. Corbin’s were brought on by a disorder called William’s Syndrome, which affects 1 in 30,000 babies. Though his were caused by a genetic condition, it does not take away the fact that they could have been detected by a pulse ox test. Corbin was only tested after the pediatrician heard the heart murmur.
A pulse ox test is a small band that wraps around the hand and foot that measures the amount of oxygen in the blood. If that percentage is below 95%, or if the difference in percentages between the hand and that foot are greater than 3%, it clues to a possible heart problem. Pulse ox testing should be done at the earliest of 24 hours of age or at the latest before a baby leaves the hospital.
Once I had educated myself about heart defects and pulse ox, I started searching online for blogs, groups, and parents that talked about these topics. I didn’t find anything about a pulse ox law in West Virginia so I started a Facebook page to help spread the word: Pulse Ox West Virginia. Once I had set it up, I had a mother of a boy with heart problems message me and tell me that she had just set up a page as well! We joined forces, and along with another heart mom, we became the driving force behind Pulse Ox West Virginia.
Since these two women were both mothers of boys with serious heart problems, they had participated in heart walks and event and had connections at the local American Heart Association (AHA) office. We met with the AHA one day and told them our plan: to pass a law in WV requiring all newborns to be tested for heart defects using pulse ox. They loved the idea and we took off! It was a short couple months later in January 2011 when we had our bill, named after my son as Corbin’s Bill, introduced to the House of Delegates. We anxiously waited for news, and when it came were we ecstatic; Corbin’s Bill had passed! But we weren’t done yet; we still had two committees and the Senate to pass through as well.
The AHA has a program called “You’re the Cure” where you sign up and receive emails and updates about events and bills. We asked everyone we knew to sign up on this website to stay updated on the bill’s progress, to send pre-written emails to Senators and Delegates, to send letters and make phone calls. We rallied support through our personal blogs, through our Twitter page @PulseOxWV, through our personal Facebook pages, and through every kind of networking media we could use. We gathered immense support from around the state and from other heart families that knew how important pulse ox was for saving lives.
On March 10th, around 8am, we all got the message we were waiting for: Corbin’s Bill has passed! We did it! Oh how we cheered, cried, laughed, and danced the day we found out the good news. Corbin’s Bill had passed!
We were lucky enough to secure a signing ceremony with the Governor where all three of us heart moms were present to see the Governor sign Corbin’s Bill into law. That day is a day I will never forget.
Now that the bill has passed, this means that every birthing facility is required to test every newborn using pulse ox before they leave the hospital. What a feeling for me, to say that I helped achieve my dream, and in less than a year! Since the bill passed, I have been working on spreading awareness of heart defects and pulse ox through fliers I created and online advocating. My pulse ox fliers have been approved for every WIC office in West Virginia, as well as the baby bags they give out to new parents at the hospital.
Right now, I am working on creating a nonprofit fund in Corbin’s name, spreading my pulse ox fliers, and in the near future I hope to set up an educational class for parents and a support group for local parents who have lost a child.
Though Corbin is not with us anymore, his story lives on through the amazing accomplishments that he has inspired.
- For more information on heart defects, visit: www.congenitalheartdefects.com
- For more information on pulse ox, visit: www.pulseoxadvocacy.com
- To see if your state requires pulse ox, visit: www.cchdscreeningmap.com
- To read more of Corbin’s story, visit: http://thecorbinstory.blogspot.com
- To support The Corbin Story Fund, visit: www.facebook.com/thecorbinstoryfund
This year is the 50th anniversary of routine newborn screening in the United States. While the very first tests were heel-prick tests for metabolic and genetic conditions, those blood tests paved the way for broader newborn screening such as the screening that may have saved Baby Corbin’s life. And even though public health laboratories are not involved with pulse-oximetry, we are excited to celebrate all types of newborn screening and the single test that made them all possible 50 years ago.