I am such a hypocrite.
The days following Noah's birth were the hardest of my life. I never told this story on this blog before but when Noah had his CT scan it showed such severe brain swelling that they could not see his ventricles. At that point they were assuming he did not have all the parts of his brain, or they were not fully formed. I was so confused, how could this happen, wouldn't and ultrasound pick this up?? No one could answer me. On day three Noah had an MRI. My husband and I walked with him to radiology, his little body wheeled in his isolette, a little knit cap put on his head to keep it warm.
My parents rallied in our room waiting for the results, we were told they would be back later that night. We waited, and waited. No one came to speak with us. At midnight my husband went to talk to the nurse practitioner who told us she hadn't heard anything. At that point I began to panic, I knew it was bad and she didn't want to be the one to tell us. We had no other choice but to wait until morning.
My mother came back first thing in the morning, we were basically stalking the neonatologist. I was sitting in the NICU with my mom feeding Noah when I over heard someone ask if the results of babyboy "ourlast name" MRI was back, the nurse responded with "yes, and the results were devastating". " He has the brain of an old man".
My mother hadn't heard and actually my first thought was how am I going to tell my husband, but he had already heard too. I felt like someone had shot me. My perfect little boy had the brain of an old man?? My head was spinning, I felt like I was going to pass out.
I demanded the neonatologist speak with us, give us answers. This is were it gets good: the person reading the MRI was from a different country. The hospital ( which has a level 3 NICU and is rated in the 10% of maternity care in the COUNTRY), outsources their radiology readings after hours through an internet based company ( so basically someone in India can read and make the report). The person who read Noah's MRI did not know he was a newborn ( which is scary because I am not a doc and I assume a baby's brain looks different), so he read it as an older man with underdeveloped myelination probably due to a degenerative disorder.
Long story short later that night the real results came back, Noah's brain was completely normal and undamaged.
So you think that would be the end. I would be able to move on. To accept what happen and to accept my boy as he is and how he will be.
But life just isn't that easy.
The days following I fell into a deep, deep, depression. I wanted to die. I am sure it was a mix of what happened and my hormones. I knew I needed help but I didn't believe in help. I felt that no one could help because no one could erase what happened and make it better. This is where I felt like a hypocrite, how could I practice something I didn't believe in? It finally got so bad that i e-mailed someone from a postpartum depression outreach group. Just as I had assumed there was no one in my area who specialized in post partum depression, so I gave up. I would heal myself.
As winter turned to spring, we were referred to a geneticist for the round of more advanced metabolic testing ( due to the fact that my pediatrician felt Noah was too normal for what was presumed happened to him and didn't "buy' it). This was all just as devastating and unbearable to think, not only there the risk that my son's health was in jeopardy but now maybe just maybe, I made him sick with defective genes.
By May the results came back normal. This was a turning point.
I began to enjoy motherhood. I loved Noah more than life itself, so cliche but so true. The warm weather renewed some happiness, we went for hikes, and out for ice cream, we took Noah on road trips, we went to the beach. I feel selfish writing this because I know how lucky we are to be able to do these things with our child, and that makes it all the more difficult for me to say this:
But there was and is still a cloud that looms over me.
Yesterday as I was driving to a field work supervisor seminar ( a class I need to take to supervise a master's level intern this year) I started crying out of no where. This happens on a fairly regular basis, especially as we approach Noah's first birthday. I think I have PTSD because it's usually followed by some sort of "flashback" to the first days of his life, my feelings, my fears. Smells, sounds, TV, a movie, or something simple like driving in my car always bring me back to those days.
I realized then that this is forever.
Will I always worry that Noah will start to regress. That he is having a seizure when I am not with him. Will my next pregnancy be plagued by fear and uncertainty the entire time. Will I stare at my next baby waiting for them to stop breathing as Noah had.
I am sorry if this is offensive to some. Noah is healthy and thriving. He is "o.k". I know that this is what I begged and prayed for. I am happy and in love. But I am still scarred by this. I don't think it will ever go away, and not sure if I can "heal" myself.
Maybe it's time to reach out to someone...
