February 7-14 is Congenital Heart Disease Awareness Week. According to the Congenital Heart Information Network Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.
This is an issue quite close to my own heart after my son, Kane, was diagnosed in utero with heart anomalies. When Kane was born staff at the Royal Alex Hospital in Edmonton, Alberta were prepared to transport him to the Stollery Children’s Hospital for immediate surgery. Luckily, we dodged that bullet. Kane remained in the Neonatal Intensive Care Unit (NICU) for 54 days, during which time we learned he had a Ventricular Septal Defect (VSD) and an Atrial Septal Defect (ASD), basically two holes in his heart. Based on where his VSD was located it was expected that it would not close. The plan was that he would be seen by Dr. Hornberger, a pediatric cardiologist at the Stollery, every six months. At our November appointment we learned Kane’s VSD and ASD had closed! Unfortunately, that discovery allowed Kane’s cardiology team to learn of another issue, Supravalvular Aortic Stenosis (SVAS). SVAS is a narrowing of the aorta just above the valve. Kane’s aorta was narrowed to the point that his left ventricle was already thickening as it worked to pump blood past the obstruction to the rest of his body. We were told that his case would be presented to the surgeon the next week and surgery would be in the next couple of months; sooner rather than later.
Kane underwent open heart surgery on December 27th, 2014 at the age of 13 months. The operation was performed by Dr. Rebeyka at the Stollery Children’s Hospital. His surgery story is told in a previous blog post titled My Heart Warrior.
Today, Kane is six weeks post-surgery, which means he can return to contact sports! More importantly, Dad can throw him in the air and Kane can head off to daycare for the first full day.
As you can see Kane is doing exceptionally well and we have a lot of people to thank for their support! Grandad Dennis, Nana Cheryl, Grandpa Bob, and Grandma Carey have all had a chance to cuddle with Kane. And he gets to see Grandmother Jean this weekend.
Also a big thank you to Auntie Erin, who flew out from England to hang out with Kane when mom went back to work.
The following are portions of a Facebook post by my friend Kristina. Her son, Sam, was my Chicks Dig Scars baby. She gives some clear ways you can make a difference for families with heart babies and I don’t think I could have said it any better.
February is Heart Month and more specifically, February 7-14 is Congenital Heart Disease Awareness Week. CHD affects 1 in 100 babies and is the most common birth defect. It can be mild and harmless to severe and life threatening, like Sam’s.
There is a lot of assistance out there for kids and families with other disorders and diseases but heart babies are sadly left behind. No one hears of babies with heart disease.
So now its time for us to pay it forward. For the month of February, we’d like to help other families in need. And that’s where you come in. There are several ways you can lend a hand.
1) Donate to your local Children’s Hospital. Most of the funding for these hospitals comes through private donations.
2) If you can’t donate money, donate your time or resources to the Ronald McDonald House. This invaluable home away from home helped our family immeasurably. They fed us, sheltered us, supported us, entertained us. Kate was happily distracted by all the wonderful toys donated there. Home cooked meals were thoroughly enjoyed there. And know that all money donated to them goes directly back into the house. No overhead. They will take bus tickets, Tupperware, toys, books, event tickets, money, COOKIES!! Call them. They want you and your time.
3) Donate your blood. Sam had almost 20 transfusions before he was 4 months old. He will probably need many many more.
I’m planning another post for Valentine’s Day, from now on known as Heart Day in our household. Here’s a little sneak peek of a couple of the photos.