Dear Mr. Sparks,
I'd like to share a story written by one of our moms, Lisa Coleman.
Dawn M. Torrence Williamson
CHERUBS President and Founder
I want to write you in reference to your Spring 2001 newsletter and a story. The doctor went and gave Trinity her first surgery after taking her off of ECMO. It was my 25th birthday, October 4, 1999. I was so happy; it was the greatest birthday present a mother could ask for. I thought for sure she was going to make it through all of this OK. But after hours of her surgery and waiting, the doctor came out and told us everything was moved back OK, but he ran into something he had never seen before. Her small intestines were buckled and rotted, so he had to remove that piece of intestine. After they brought her back to the NICU, I saw a sight I was not prepared to see-- her intestines in a cone-shaped bag, suspended and tied to the top of her bed. Her intestines were lying outside of her, resting on her stomach. I couldn't believe the sight I saw. I was told that they were too swollen to put back, so we would have to wait for a few days before they could try to put them back. I was so devastated. They were able to put them back, but she had to have a colostomy bag on her. I wasn't sure for how long. Well, as days went on, she started to get worse. Then I was told that she had a form of e-coli, that when the doctor cut her intestines, he let a form of the e-coli out into her bloodstream, and that the doctor didn't wait on her blood test to come back. I was upset at this time, but I quickly turned my attention to Trinity and put this in the back of my head.
On the 15th of October, I went to Children's to see my daughter. Before I could step off of the elevator, my dad was at the doors waiting for me, telling me that the doctors want me to pull the plug. We went into a private room. The doctor told us Trinity's oxygen level was low, that she was in a coma, and she wouldn't survive the night. If by some miracle she would survive, Trinity would have brain damage from lack of oxygen. So the doctor stepped out of the room so my husband and I could come to a decision. Of course it didn't take long. We decided it wasn't up to us to choose when she should pass away. It would be hers and God's, of course. The doctors and nurses were almost disgusted with our decision, but I didn't care, this wasn't their daughter; she was mine. So that night was very hard. Time went so slowly. When I was finally alone with my baby girl, I put my hand on her head and sung "Jesus Loves You." Then I said something that was so hard for a mother to say. I held her sweet little hand and told her that if she couldn't fight anymore and she had to go, that it was OK and Mommy will always love her. I kissed her on the head and walked out. An hour later, I decided it was time to hold her, so they did what they could do so that I could hold my daughter. That was the first and last time I held her warm body in my arms. She passed away 2 minutes after I held her. Two days before that, I knew it was coming. It's like she let me prepare myself for it. Not every parent is the parent of an angel. That is what I tell myself everyday I wake up.
When I had found out about her defect when I was 5 months pregnant, on the way home from the doctor during my crying, I looked at my husband and said that her name would be Trinity. He asked why. I said, "The Son! The Father! The Holy Ghost! is what that beautiful names stands for." But after Trinity passed, I told my husband that I blame the doctor for letting the e-coli virus through her blood stream. We talked to a lawyer, but he won't touch the case because of CDH. I was going to send all money for CDH research, also buy my daughter a headstone, which she still doesn't have. I feel so guilty about that. I'm having a hard time affording one, but I will one of these days. I learned not to take James, 7, and Dacia, 3, my son and daughter for granted anymore. Every day of their life is precious to me. I also learned not ever to say never. I thought something like this would never happen to me. So I tell everybody I know to don't ever, ever say "never."
Written by Trinity's Mom, Lisa Coleman (Ohio)