This week is Congenital Heart Awareness Week - Feb. 7-14. Three years ago I knew nothing of heart defects, CHD's, open heart surgery, feeding tubes, pulse oxidation, caring for a special needs medical fragile child. 3 years ago, I was 7 1/2 months pregnant with my second child, all ultrasounds came back fine, I was having a healthy baby boy.
That changed when Colin was 3 days old and diagnosed with an undetected congenital heart defect know as Hypoplastic Left Heart Syndrome (HLHS). HLHS basically means the left side of his heart does not work and he needs at least 3 surgeries to help him survive, not fix his heart, he will always just function on half a heart.
Life changed for us then. At first we were in a scary place, it was overwhelming and sad. But I push to focus on the word HOPE. We have so much HOPE for the future. Medical technology has come so far in the last 30 years and who knows where it will take us in the next 30 years. If I was born with HLHS in 1979, the doctors would have sent me home to die as there was nothing really for them to do. BUT now, look at my child thriving, look at him and his love of life. His smile, his sense of humor, his mischievousness. There is so much HOPE in his life.
A heart defect does not just affect the child, but the whole family. I would love to say the last 3 years have been a breeze, but that's not reality. We have been through some tough times. I even have the white hairs to prove it. Stress was never really a factor in my life before, but you learn to roll with the punches, you have to in order to make it. Katherine has and will always be affected by her brothers heart. At 5 she asks a lot of questions about Colin's heart, she worries about him, she even worries about him dying. Yes, a 5 year has taken on that stress of what happens to my brother & his heart.
Our parents, brothers, aunts, uncles have stepped in helped us so much through this. In a way it has made us stronger as a family. It has made us appreciate life and love a whole lot more.
I HOPE for Colin to have a long, healthy life. I HOPE for all kids that are born with broken hearts to have the chance the thrive and succeed. I HOPE for a cure one day. I HOPE for medical advancements that make HLHS no big deal. I HOPE for my child to always be here with me.
With Colin's smile and kisses, he gives me that HOPE! He keeps the HOPE burning in me.