My pregnancy was pretty uneventful. All the check ups were good. My water broke in my home at 10 pm, it was around four weeks before Luisa’s due date. As I endured thirteen hours of labor, all I could think about was how when it was all over, I was going to have a baby of my own. I couldn’t wait to meet her and have a little family. I was so excited to see my baby. When she finally arrived and I laid my eyes on her I felt so much love, like I had never felt before.
I was in a new kind of love.
The doctor wasn’t handing her to me though. Things were not going the way I was told they would in my birthing class. No skin to skin. I could tell something was wrong. The neonatologist was apprehensive about handing her over for a picture with me and my husband. They wrapped my baby up tight in a blanket and he quickly sat her down on me for a photo. Then he took her back right away, and my husband was asked to go to the NICU with her.
“‘This can’t be real, everything will be fine in a few hours,’ I told myself.”
People showed up to see my baby, but we all just sat in my hospital room staring at each other. No baby in the room. I felt like everyone was disappointed. I gave birth at 11 am, and for the rest of that day my loved ones hung around waiting to see the baby. At the end of the day, I finally was able to stand and walk over to the NICU and see her. I was not allowed to hold her because she was too unstable. I was uneasy but I still felt like we would have her home in a few hours. Hours turned into days, days turned into weeks, and weeks would turn into months. No answers, just scary strange rhetoric from what felt like a very insensitive hospital staff.
After a few days of visiting our local NICU, where Luisa was, we were told about a genetic disease called central congenital hypoventilation syndrome. One lonely night sitting by my daughter’s bedside, a nurse decided to tell me the tale of Ondine’s Curse. Ondine’s Curse is another name for central congenital hypoventilation syndrome.
As I sat there, listening to him tell the mythical story of a mermaid who cursed her cheating husband to stop breathing each time he fell asleep, I felt like I was in the twilight zone. A numbness was growing in me. It was becoming very clear to me that bringing my baby home was not going to be easy. I wasn’t just going to wake up to the good news that she had gotten better overnight.
I began questioning, asking God to show me what my role was in this.
How can I still be her mom?
How can I still show her love?
How can I take care of her?
The birthing class had not taught me any of this.
The genetic test was ordered. We were told that it could take up to six weeks for results. Luisa was stabilized on noninvasive ventilation for about a week, and while things were a little less scary, she was not getting any better. There was no hope of weaning her off of life support.
We decided, after a few unpleasant encounters with the neonatologist in our local NICU, to transfer Luisa to Texas Children’s Hospital in Houston. The Kangaroo Crew picked us up in a private jet. They were so kind. I felt like it was the first time I had been treated with respect since my daughter had been born. They treated me like I was a mom, not a defective woman who gave birth to a defective little human.
It was at Texas Children’s and the Ronald McDonald House that I began to learn my role as Luisa’s mom. We received the results of the genetic test, and they were positive. The staff at Texas Children’s treated my baby like she was something really special. They taught me how to care for a baby with a tracheostomy. I felt like I was getting some of my control back.
At Ronald McDonald House I met other families with sick kids. I felt like I wasn’t alone anymore. I also met another mom whose baby had a tracheostomy, and it was a magical moment I will never forget. The narrative in my mind was changing, and God was showing me what I had asked him for. After close to three months in the hospital, we finally brought Luisa home.
Luisa turned four a couple of weeks ago. She is a happy, healthy child who loves music and dancing. She takes jazz and ballet. Luisa’s favorite show is spider man and she loves to go to the beach.
My experience as Luisa’s mom is always changing, and God is always showing me how to navigate my role. I am so proud to say that throughout her life I have never gotten angry at God for this path we are on. I trust God more than ever now. I know what it feels like to be carried by him in love.
– Marilyn Bailey marilynbailey2935