Writing this my heart is heavy. I am in a support group for other parents with children with HIE (Hypoxic Ischemic Encephalopathy) and it seems like families are having to endure the loss of a child due to complications from HIE every week. My heart is heavy for these families, for their loss.
But selfishly, it also instills fear in my heart for my own child. I thought the worst was over, when we got out of the NICU, we weathered the first year. But the thing about HIE is it always feels like you are walking a thin line – the line between progress and regression, and between life and death.
We know nothing is ever certain in this life. We learn to cherish every moment because we don’t know how many we have. That is the reality for parents with children with special needs. Its not something that we constantly think about, but its always on the back of our minds. The fear of losing.
I think this is one of the determining factors on why we decided to pursue stem cells. I feel like it could be the tipping point in the scales – turn something in our favor – for both progress and the chance of life. Repair the damage that could make the difference between life and death.
Its a scary place to be, knowing that you might lose a child to something you have no control over.
My heart is very heavy tonight for the loss of these precious children and my thoughts are with the families that are left to pick up the pieces and carry on with the memory of the babies that are gone much too soon. Please say a prayer for the HIE parents that are lost in this moment and wondering why.