When Owen came into this world, it was very obvious that there was something very, very wrong. Two hours after he was born, he was on C-PAP, a machine to assist his lungs in filling up efficiently, and at eight hours he had his first of two surgeries to insert chest tubes. At 24-hours old, he was put on a ventilator, and yet “coded” three different times while ON the ventilator. His extremely talented and capable Neonatologist came down and told us that there was nothing more he could do for him and that Owen needed to be transferred to our regional NICU in Manhattan…and that he didn’t know if he was going to make it through at all.
A week after Owen was born, he had an MRI and an EEG. We were told it was just to “rule things out”, and naively didn’t think much more of it than any of the other tests being run. I will never forget the looks on the faces of those five doctors when they approached my husband and me and asked us to take a seat.
Owen had suffered a stroke.
It was sometime when he was still in utero, approximately three to seven days before he was born. No one could tell us why, or if it would happen again, or a prognosis. Would he walk? Talk? Function? Eat? Show love?
Was I strong enough to parent a child with Special Needs?
Today, we know that Owen has right-sided hemiparesis, strabismus, some global delays, and after a repeat MRI in October of 2012, another bomb was dropped on us. Owen is literally missing his arcuate fasciculus bilaterally – that’s the part of the brain that is responsible for connecting the sections of brain responsible for receptive and expressive speech. It is shockingly unrelated to the stroke and Owen is just the sixteenth person worldwide to be diagnosed with this condition. There is no prognosis, and it is so rare that there isn’t even a name for it.
Owen was also formally diagnosed with Autism in October of 2013, leading me to believe that he was going for a hat trick.
On the bright side, with his big blue-green eyes, he’d make a gorgeous poster child in my (completely objective) opinion…