Happy CHD Awareness Day

This is a week full of hearts. Heart candy, heart decorations, heart cards, and stuffed animals with hearts on them. So it's only fitting that this would be congenital heart defect awareness week. For every heart I see I think of all the little kiddos with broken hearts, some repaired, some unrepairable, all bearing the scars of being 1 in 110 babies born with a congenital heart defect, making it the number one birth defect in the world. Some of those families get a diagnosis prior to birth, prepped for the worst case scenario that could happen once their children arrive. Some, like me, have their visions of a perfectly healthy baby crushed soon after birth, their world turned upside down by their children's diagnosis. Some of these babies won't need surgery, most will, and some won't live to see their first birthday, let alone grow up to have full, healthy lives. The scope of all that CHD covers is vast from simple murmurs that one can live with, to multiple surgeries, or life ending scenarios. Every child born with CHD will need life long medical follow up and care. All will have their story forever changed by their diagnosis. Most will have a visible scar that represents all that they went through. Scars there for all to see that they are survivors. 

October 2010

The parents of children born with CHD don't have any visible scars, but they are also survivors. Their hearts were also broken. They have spent hours begging and pleading with God to please let them change places with their tiny baby who they have to hand over to a stranger, who will take them to have their heart stopped. They have cried tears that only other parents who have seen their child face death can fully understand. Their story has been changed and they get the profound honor of having given birth to their heros. They never take a second of their child's life for granted because they know full well that every time their child's heart beats it is a miracle.

I get to count myself among this blessed group of parents whose child has not only survived a CHD diagnosis, but is thriving. The more I immerse myself in the CHD community the more I truly realize how unbelievable Zane's story is. Every single step of the way, from birth, to today has gone absolutely as perfectly as possible. That is rarely the case. No complications, no bumps in the road, just the one, completely successful surgery is beyond amazing. Over the past month I have read story after story of TOF babies who required multiple surgeries, multiple trips to the cath lab, and weeks/months in the hospital. All things that could have happened to our sweet heart warrior, but by the grace of God our battle was much shorter.

 Going home with a little banana just in time for Halloween on the morning of day five.

I have also read lots of tributes to heart angels, children born with a CHD that didn't make it and have earned their wings. Congenital Heart Defects are the leading cause of infant death around the world. Thousands of families each year face the unfathomable reality of loosing a child. CHD kills more children each year than all childhood cancers combined. Little is known about the causes, sometimes there is a genetic factor and sometimes you just happen to be the unlucky one in a hundred births.

 

So during this week of hearts I celebrated the life of my heart warrior, one of close to two million CHD survivors in the United States. I wore red, I ran a 5K for Mended Little Hearts with the proceeds going to bravery bags for families in the hospital. I tweeted facts & figures about CHD, and Zane rocked his scar. I received emails from strangers who had seen that I had TOF baby and wanted to ask if I needed help, wanted to talk, or just needed to vent. I became part of large community all fighting for CHD awareness and praying for better treatments for those who are still fighting their CHD battles. The scars of my journey were on the forefront of my mind, I prayed for those who are walking now, and I counted my blessings that our story is so miraculous. I looked back at previous blog posts about Zane's surgery and was in ahh at how far we have come and how much we have over come. This week I celebrated every miraculous birthday, all the tears, every doctor's appointment, every difficult conversation, everything that we've been through and tried to raise awareness for all the other heart warriors out there as well.

Happy CHD Awarness Day from my heart warrior!!

First birthday, rocking his scar proudly. This apparently would become a very fitting tradition.

Second birthday

Third birthday

Fourth birthday