chd week

This week is a week dedicated to congenital heart defect awareness. Heart defects happen about 1/100 pregnancies…that’s like, 40,000 kids a year. Some are minor, and some are more debilitating and require multiple open heart surgeries, some are fatal. It is the #1 cause of birth-defect related deaths.The average age for CHD deaths is ONE. CHD kills more kids each year than all forms of childhood cancer combined. (yikes!)

A year ago I had no idea what this would mean to me, how it would affect my life and the lives of my little family. On Monday night for family home evening, we made valentines for Maxwell’s Park. I always wondered why people left things at graves, decorated them for different holidays. I know now it’s not for the people who have passed on. It’s for us, here left behind. It gives us something to do for him, to include him, to let our kids learn about him as a member of our family. He is never far from my mind, but has been in my thoughts even more the last few days.

Wearing red this week.

I knew I wanted to add a silhouette of Max to our Valentine collection I made last year. I’ve been so anxious about it because I wasn’t sure if we had a side profile of him. Isn’t that horrible? I was so worried that I wouldn’t know how he looked like from the side of his chubby little face, and there is no “going back” to get that shot. Once again how thankful we are for Carol and all the pictures she took. I finally updated our mantle today and I feel so much better.

Today we went to visit Max’s Park. We took snacks and our laminated valentine cards and some zipties. The kids ran around and I got out my supplies, a special kit I keep in the car to take care of my son’s grave. I gently cleaned his granite, sprayed the dirt out of the white letters, and wiped down the bench. These are part of my chores, like cleaning the bathroom and getting groceries. It’s something I can do for him, something I can do for ME to feel any sort of normal.

Max’s heart was already formed by the time I knew I was pregnant. We know that no amount of intervention could have saved him, nor was he meant to be saved. Maybe in five years they will have different technology- they are doing surgeries today that were previously impossible. 3D printers are being used to make perfect replicas of specific heart anatomy so that the surgeons can best prepare and plan for surgery. It’s amazing, really.

This week is all about bringing awareness to congenital heart defects. At your twenty week ultrasound, ask about the heart, specifically the four chambers of the heart. If your baby seems blue or “off” at birth, ask for a pulse ox test- this can check the amount of oxygen in the baby’s blood and is a good indicator of critical heart defects. Most of all, remember my Max this week..remember his little heart. Remember his dark hair and his fat rolls and his family that loves him SO much.