Most people don’t know much about Congenital Heart Defects (CHDs), and until four years ago CHD wasn’t in my vocabulary either. Now I’m a heart mom 24/7.
Today kicks off CHD Awareness Week 2014. I’m wearing red for my “1 in 100” son Magnusson. Between Mags’s birthday on the 28th and CHD Awareness, February is our month.
This week, we’ll be raising awareness by making a special video for TinySuperheroes, participating in the Mended Little Hearts Roar ‘N Run 13.1K, doing a photo shoot for the Rock Your Scar contest, and more.
I think many people have a misconception of what awareness is, and Lance Armstrong’s charity fraud didn’t help. Knowledge is power. It can save lives and increase chances for survival. I wish someone had made me aware of CHD before Mags was born. I had no clue back then, and I’ll always wonder if things might have turned out a bit better had we only known.
I was completely unaware of Mags’s condition and the warning signs of CHD. I didn’t know which questions to ask during my 20-week ultrasound, when they found a “marker” on his heart but thought it was “probably nothing” and didn’t follow up with a fetal echocardiogram. I didn’t know not to let my labor drag on for 40 hours—I should have requested a c-section instead (ironically, I didn’t want a scar). And I didn’t know to request a pulse oximetry screening, which could have alerted us to his heart condition hours sooner, before he lost significant oxygen, turned blue, and developed Hypotonic Cerebral Palsy.
When Mags was born, I spent about an hour with him before the nurses noticed his irregular heartbeat and whisked him away for testing. A few hours later, a nurse informed us that his heart was enlarged. Before he even had a name, they airlifted him to St. Joseph’s Hospital in downtown Phoenix. We were in total shock, and the grave looks on the doctors’ faces told us we needed a miracle.
Later that day, we discovered that he was born with a rare CHD. A sub-aortic stenosis (extra tissue below the aortic valve) prevented the blood from leaving the left ventricle and thickened it. Dr. Cleveland performed open-heart surgery on Mags’s 3rd day of life. During surgery, he had to remove the aortic valve along with the excess tissue and replace it with a donor valve. Despite some initial issues getting Magnusson to eat, he recovered extremely well. In fact, his rapid growth astounded doctors—his height and weight were regularly beyond the 90% for his age. By 8 months old, Mags required a second surgery, a Ross Procedure, followed by a third surgery at Phoenix Children’s Hospital shortly after his 3rd birthday. We got lucky, and we are thankful every single day for our strong little heart hero.
Mags is alive today thanks to CHD awareness and research. Technological advances save lives. In fact, Mags might be able to skip his next surgery thanks to a fairly new device called a melody valve. When his pulmonary valve starts to narrow, they can insert the melody valve inside it to hold it open.
Hopefully, you have a better idea of why awareness is important. It’s not just about “Yeah, I know CHD exists.” It’s about prevention, preparedness, and research.
I invite you to help us spread awareness this week. Educate yourself about CHD, learn the five questions to ask during a 20-week ultrasound, or donate to a wonderful organization like MendedLittleHearts.org. Thank you from the bottom of Mags’s mended little heart!