Congenital heart defects are diagnosed in 1 out of every 100 babies, making it not only the most common birth defect, but also one of the most deadly. Within the United States alone 1 in every 100 babies equals about 40,000 children born each year with a congenital heart defect. Many of which are not diagnosed until after delivery. Even in the greatest of odds, over 25% of children born with a congenital heart defect will have to have at least one intervention or invasive heart surgery to repair their congenital heart defect.
These facts are horrific, they are terrifying, they stack the odds against children and families across our globe from day one...however...the most people recognize about it is a heart shaped red and blue ribbon, or cut photo contests with children showing off their "zipper club" scars from open heart surgery. Today...we present the reality of these congenital heart defects, the ugly side of that scar...the part that instills so much fear into thousands of families each day, the part that causes mental stress and agony, the part that will hit you in the core of your being. At the same time...this is the part that shows the courage of each family, the strength of each child, the hour-by-hour wait for a child to open their eyes again, to smile, to cry...the moments that cause one to appreciate every second of their child's life because without the advances in medical technology, without the amazingly skilled hands of doctors performing complex surgeries on something the size of a walnut...their child's life would be shortened drastically, and without warning.
The images below are raw, they are emotional, they are graphic in some ways...they are real...and this is the side of congenital heart defects that isn't seen unless you're standing in the hospital room. These images are not to be copied, but you may share this blog posting in and of itself as a whole. They are the exclusive right of myself and the Williamson family.
He was diagnosed before delivery with Tetrology of Fallot w/ Pulmonary Atresia & MAPCAs; he has also been diagnosed with 22q deletion syndrome also known as DiGeorge Syndrome. He has an infectious smile, is cuddly as ever, and quite literally has everyone who meets him wrapped around their finger...especially me. Next fall this little super hero will be the ring bearer in our wedding, providing nothing crazy happens and he behaves himself in order to do so.
Fast forward to August 19, 2016 - Oli and his family we admitted to Children's Hospital of Philadelphia for what they hope will only be a week long stay (give or take) from his first open heart surgery. The night before they posted to his Facebook page the last photo of his chest without a scar...as the following morning they would walk to the doors of their personal hell, wait hours to hear the news his surgery went okay, that the surgeon was able to follow one of two plans created for him and that despite what he went through in that operating room...he was going to be okay, and in fact they would go home with their baby.
I'm down on my knees again tonight,
I'm hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.
Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there.
Can You hear me?
Can You see him?
Please don't leave him,
He's my son.
"You are fierce. You're a survivor.
You're a fighter through and through.
Little brave, breathe.
There's a warrior within you. "
Beau Taplin - Lest we forget
To follow Oli's journey you can visit his Facebook Page at:
There is also a fundraiser established for the Williamson family as well - all commissions will be donated directly to them to help with travel expenses, meals, hospitals bills, anything they may need during this time and the months to come.