By T. C.
I am so glad I discovered this site.
Four years earlier, when I had Clara Rose, a Turner syndrome baby at 19 weeks gestation, I felt shocked and numb. I went through depression, then a state of denial, then developed symptoms of post-traumatic stress disorder.
Only now am I realizing that there is no way for me to avoid the pain and grief associated with Clara’s birth and death. I know in my heart that I am very fortunate. Before losing Clara I had a son, and one year after losing Clara I went on to have a baby girl. It is not a lack of gratitude that has me returning to my grief and pain. It’s simply that I don’t have control over it.
Every time I’ve looked at the urn that contains Clara’s ashes I’ve said, “I just can’t deal with this right now.” For three and a half years I pushed aside my feelings about losing her.
Now I am having anxiety attacks in hospitals. So here I am, sitting at my computer and tentatively searching for others who have gone through a similar experience to read their stories, see how they are getting through their pain. Finding others who have made the same choice for the same reasons feels miraculous to me. Even though I knew that other people had babies with fatal forms of Turner syndrome, they were invisible to me. When I had Clara I didn’t want to know other people who has lost babies, didn’t want to be part of that “club,” as of by not relating it meant that it wasn’t really happening to me.
I have read many of the contributions on this site and I think that I can hear an anger in a few of them that I can relate to now. I did not want to be crying and sad and touchy-feely when I had Clara. I wanted it to be over, I wanted to move on and stop feeling anything at all. I felt angry and put out that this had happened to me.
Here is my story of Clara Rose
My partner and I were estranged and I hadn’t seen him in a month. I was raising our 5 year-old on my own while going to university full-time. I was anxious about the pregnancy, and had a bad feeling about. Then I got a call from the police.
My partner had been at the wrong place at the wrong time and was stabbed by a crack addict outside a bar. It was touch and go for him. He was in intensive care 600 miles away. I left our son with my mother and went to my partner’s bedside. An exhausting week later he was back in his own place under heavy medication with dressings that needed changing several times a day, an ostomy appliance and the knowledge that he would have to have more surgeries in the future.
I returned home to care for our son and go to my schedule ultrasound to check on the baby, whose due date was four months away. I knew something was wrong when the technician wouldn’t say much of anything to me and called in another person to look. They told me nothing but called me back for another ultrasound a week later. That’s when they told me that there was fluid where there shouldn’t be, a possible heart defect and missing organs.
I asked to be referred to a renowned children’s hospital in my home province. I left school, packed our things and moved back to where I’d come from so that I would be close to my partner and my family. We went to see a genetic counselor, have another, more detailed ultrasound and have an amnio done.
There had just been a major hurricane that tore up trees and knocked out power all over the city. Everything was shut down except the hospitals. For support I had at my side my mother as well as my partner, who as still recovering from the stabbing and was heavily medicated and skeletal.
The doctor made it clear that he suspected Turner syndrome and that there was no hope of survival for the baby. Given the rate at which the fluid under her skin was making her grow, he thought inducing labor now would be preferable because a cesarean was almost certainly required if we were to wait much longer. They offered to check me in right away.
I don’t know at which point I entered into shock. but by the time they put a bracelet on my wrist I was well into disassociation. My partner was in so much physical pain that he could barely stand, so he was not in good shape to support me. My mother did her best, but her animosity toward my partner was so strong that it was a constant distraction. I would have preferred to be alone except in the wee hours, when the labor-inducing drugs kicked in and I was sick and glad my mother was there.
I will never forget the delivery room or the look of sympathy on the anesthetist’s face when I begged him for an epidural. My baby was born shortly afterward. The doctor came in, caught her, deposited her on a metal cart and left. Someone else grabbed the cart and wheeled it away before I could look.
Suddenly we were alone, myself, my partner and my mother. A little while later they brought Clara Rose back in all bundled up so that just her sweet face showed. We each held her tenderly. My mother was making it clear that she wanted to leave and I had to go with her to get a ride home. So I let my baby go.
When I got home I told our son that his sister had gone back to God. He puts her in his drawings as his angel sister. My partner had her name tattooed on his shoulder.
I have never told this story to anyone, until today.