I Remember

Posted on Posted in Induction/L&D, Stories, Thanatophoric Dysplasia

By Jeanmarie

I remember (Teddy Bear)
I know many believe that he is elsewhere looking over us. I used to believe things like this, before it was my son who died.

Some days are OK. Not great but OK. I love my husband and I love my living son, Alexander. But that doesn’t change that my Gabriel isn’t here. I know many believe that he is elsewhere looking over us. I used to believe things like this, before it was my son who died. Now, when it would help me most to believe, I can’t. He is just gone and that is all I believe.

Some days are not OK. Some days I flash back to moments of my pregnancy with Gabriel. Lying on a table with a technician looking grimly at what should have been a fun ultrasound. Not fun. I remember the charts with survival statistics that the doctor then showed me. I remember hope being provided over and over (Down syndrome? Dwarfism? Fixable Heart Problem?). Then having that hope dashed over and over. No, not Down syndrome, not survivable dwarfism, not fixable. I remember the first time I heard the term Thanataphoric Dysplasia. I remember the horror of learning that Thanataphoric meant “death bringing.” I remember looking it up and finding horrific pictures on Google. I remember seeing Gabriel’s bent and broken bones in ultrasounds and wondering if he was in pain even in utero.  I remember seeing him move around during the ultrasound and wanting so badly for this to be a nightmare.

It was not a nightmare. It was reality. Thanataphoric reality.

On my very bad days I remember other things, if “remember” can be the word for the visceral sensations they bring. I remember the shape of the room where we were told with finality that my little boy had a lethal condition. I remember the trash can I was staring at while the doctor explained that when Gabriel was born, even if he managed to make it to be born full term, he would suffocate because his lungs could not expand.

On my worst days, like today, I remember the hospital. I remember knowing that my baby was going to be born and there wasn’t anything I could do to stop it and that he would die. No hope. Sometimes I feel the agonizing pain of labor. I remember realizing that he was coming now and our time was up. I thought I’d experienced horror before that, but I hadn’t. That moment defined horror for me, I think forever. After his delivery I remember hearing a guttural cry and repeated screams and realizing that they were coming from me. Sobbing, whining, keening, and gasping for air. I remember saying “I’m sorry” over and over and over. Moms are supposed to be able to fix things. I couldn’t fix this.

I remember holding him and sobbing, thinking he was gone already. Then he moved, just a little, an attempt at a breath. Again…horror.  I yelled to the nurses for help and I was told that it can happen but at 18 weeks there wasn’t anything they could do. Then it happened again. In my arms. And then no more. He was so very tiny but he was a baby, our baby and he was gone.

I remember leaving the hospital through back hallways so I wouldn’t have to pass the nursery and the nurse who pushed my wheelchair telling me that he and his wife also lost a baby and he was very sorry. I saw that nurse for only two minutes but I remember what he looked like, and the tears in his eyes.

There is more.  Much more.  I’ve given the tip of the iceberg but I just can’t write anymore.  I’m wiped out from it.  Empty.