Kids with CHD are diagnosed at all different times. Some are diagnosed safe & snug in their mamas' belly during the 20 week ultrasound, some are diagnosed shortly after birth. Some go home only to be diagnosed with their CHD weeks later, even still some go undiagnosed for years. Elliott Wilde was diagnosed two days after his eight week birthday. I'll always remember that day; the day my world as I knew it came crashing down.
I remember in those weeks before he was diagnosed that I would lay wide awake at night with him asleep in the bassinet next to me, terrified of SIDS. That something awful, explained, would happen and I wouldn't be able to stop it. I shook it off every morning when I woke; every feeding in the early, ungodly hours but when all was quiet and dark, I felt stricken with a fear I could not shake. In those days I was naive to the term Congenital Heart Defect, unaware of the statistics. But in my heart of mama hearts I knew something wasn't right.
It's CHD Awareness Week, and looking back, I am angry I didn't know until he was 8 weeks old. Elliott was different from the moment he was born and after several visits (or what felt like several visits) to different doctors to ask, why is he so sleepy?, why is his cry so quiet?, why is he breathing so fast?, I still had to wait for that ride in the ambulance and watch a breathing tube being shoved down my sweet boy's throat to hear the news.
Really, I am fortunate for that ambulance ride. Some kids go undiagnosed until it's too late. The sole reason that CHD Awareness is so important, in my eyes, is that awareness saves lives. Back when Elliott was born (a mere 18 months ago!) the State of California had not yet passed the bill for newborn pulse oximeter screening. Today, California babies are being screened and many other states are following suit. Awareness has made this possible. Awareness has saved lives. My eyes are now open. I am no longer laying in the dark, grasping for answers. This week, my heart beats for awareness.