Trisomy 13, Lexie : The Delivery
The delivery was over. They put Lexie on my chest to bond with me and began explaining about a cleft lip. Alexis was rushed away for tests and the words ‘cleft palate’ and ‘other problems’ rung like ugly gongs in my ears. My head was spinning and I couldn’t see straight. This was all wrong. All terribly wrong. My heart was hurting. I knew she might have a difficult life ahead of her and tears sprang into my eyes. Michael and I cried together and prayed and they whisked her away.
I tried to focus.
“Would you like us to share the information we have on your daughter or do you want to wait for your husband? “
There was no way I was going to let them leave. “Alexis has a condition known as Trisomy 13.”
“Trisomy 13? What in the world is that?” I wondered. I felt like I was floating far away I could barely hear them through the roaring in my ears.
The voice kept droning on, “Trisomy 13 has many parts to it. Not all children with the condition have the same characteristics. Some have small heads, their eyes are close together, and their ears are lower.”
“None of this makes any sense!” I screamed inside my head. “What difference does all of this make?”
“Some of the babies have neurological problems, some have no brains, some have heart defects or are blind and deaf. Alexis has a problem with the thirteenth chromosome. Most of these babies never live past three months and we have no history of one living longer than one year. About one in five thousand babies are born with this defect each year. She has many difficulties that we’ve noticed already, and there are more that you’ll discover after you’ve had her home for a while. We’d like to test many of these areas, such as her sight, hearing, possible heart defects and neurological problems in addition to her bilateral cleft lip and palate.”
My head was spinning with the possibilities they were throwing out at me. I felt sick to my stomach and I couldn’t breathe.
“But I’m afraid even though all of these conditions are possible, the most difficult thing right now is that she’s not able to breathe on her own. Once we take her off the ventilator, she’s probably not going to make it. We’re going to do some more testing and should be more conclusive by the end of the week.”
Not able to be calm any longer I covered my face with my hands.
“Are you sure you don’t want us to get someone for you?” the doctor gently asked.
“Just leave!” I screamed again inside of my head. I was holding my breath because I thought I would scream if I tried to breathe. The doctor came up and patted my hand and tried to comfort me. I knew she felt so bad and wanted to help, but nothing could help now.
No one could help.
I just needed to be left alone.