Down syndrome

Ginny's Birth Story


Everything seemed to stop. Even with all the nurses running in and out of the room and all the commotion; I just started to fade away. I could hear people talking. “She has a chin like mine.” I heard my husband, Tim, say. But I didn’t see anything, except for her eyes. They had placed her on my stomach and we looked into each other’s eyes. Her eyes were wide open and she wasn’t crying. She was just looking at me with her beautiful but ever so slightly upward slanted eyes. Then there was nothing. In my heart I knew. I think I had known for a long time now. Why else would I have kept myself from ever letting my heart fully embrace the anticipation of a new baby? Why else was I so guarded about even telling people I was pregnant? Because I knew, I knew she might have Downs. And there she was, looking at me. Her eyes were the eyes of a baby with Down syndrome.

It was a high risk pregnancy based on my age and I also suffered from gestational diabetes again. I had an ultrasound in Denver. They told us the baby was a girl, girl number 5. “We only do girls,” we joked. We already he a name picked out, Ginny. My Aunt Ginny, whom I had dearly loved, died several years ago and I wanted to name her after my aunt. After another month or so I had one more ultrasound and that is when it started. The doctor that read the ultrasound called me later that day and left a message asking me to call her back and page her at the hospital. I felt the urgency in her voice and my heart skipped a beat. When I spoke to her later she said that there found 2 markers for Down syndrome and that I needed to make a decision. A decision? About whether or not to continue the pregnancy she explained. I was shocked, of course I did. Besides they were only risk factors not a diagnosis. I was strongly encouraged to have an amniocentesis but ultimately decided not to have the procedure. The test could result in a false positive and there was a risk of harming the baby. But I could feel the possibility of Down syndrome nagging in my heart for the rest of the pregnancy. I cried about the possibility for a few days but then pushed it to the back of my mind and would not let it occupy my thoughts. I had too many other things to worry about right now. Tim had been suffering from chronic severe back pain even after back surgery and had lost his job the previous month.

I checked into the hospital a little before 6pm on July 18th, 2011. I was given the ever so fashionable gown to change into and the nurse started an IV. The doctor came in and gave me a dose of Cytotec to help my ripen my cervix and induce labor. Then before he left he said, “I’ll see you tomorrow morning.” Things were moving along fine, I even watched some TV for a while. Around 11:00pm the contractions got stronger. I had to breathe through them as I clung to the side of the bed. The nurse came to see if I needed another dose of Cytotec. She was shocked to see that I was 90% effaced, dilated to a 7 and had a bulging bag. Within just a few minutes the contractions got much more intense and I wanted an epidural. They called for the doctor and the anesthesiologist and the nurses came in to start prepping the room for delivery. Then the contractions were so strong I could not control my breathing anymore and I started screaming with every contraction. My water broke and pain ripped through my body. The anesthesiologist came in but I was crowning and it was too late for an epidural. I realized I was going to have this baby without any pain medication and panic set it. The pain was like nothing I have ever felt before and I completely lost control. Screaming, writhing, begging and calling out to God for help. At 11:36pm the doctor walked in and as he sat down he said; “You need to push.” and with one big push Ginny literally shot out onto the bed. It wasn’t over; I still had to deliver the placenta and be sewn back together since I had a significant tear during the delivery. It was a horrific experience. I felt as if someone else had taken possession of my body. The pain lingered and I could not stop shaking. The nurse finally gave me some pain medication in my IV but all I could think was, “too little too late, lady.”

“Here she is, the incredible one,” the nurse said as I was wheeled down the hall to my new room. I didn’t feel incredible. I felt like my insides had been ripped out all I could do about it was to scream at the top of my lungs. I was embarrassed at how I had totally lost control. But it was over now and I couldn’t change the past. They settled me into the bed and took Ginny to perform the normal newborn procedures; at least that is what I tried to tell myself. Alone in the room I asked Tim if Ginny looked like she had Downs. He said she looked perfect, but I was scared. Later, they brought Ginny into the room and I held her close. Finally a Neonatal nurse came in and wanted to “talk” to us. She asked if I knew why she was there. “She has downs,” I said. It was almost a relief to say it. She went on to describe why they thought Ginny had Down syndrome. Skin folds in the corner of her eyes, crease in hands, larger space between big toes, etc. I faded away again. I don’t remember her leaving the room. My body rocked with sobs as I just let my emotions boil over; Tim tried to comfort me but I wouldn’t be comforted. I was afraid. Afraid of the unknown; afraid of what kind of life Ginny would have. I loved her, like I had loved all of our newborn children, but all my dreams for her seemed to come crashing down.

The nurses said they were having a hard time keeping her temperature up and bundled her in heated blankets. She was sleepy but able to nurse right from the beginning. They took her to the nursery and didn't bring her back for several hours said she had a high hematocrit. She spend about 6 hours under the bilirubin lights to help with jaundice. I walked down to the nursery and held her as I nursed her. She was hooked up to wires and the monitors would sound when her oxygen got too low. I had seen the twins under the lights and hooked up to multiple wires so it was a familiar feeling. I couldn't help but wish that they were wrong, maybe she didn't have Down syndrome. She had an open PDA in her heart but there really didn't seem to be any obvious differences between her and my other newborn children. We found out later that the PDA had closed on it's own and the cardiologist said that her heart looks great.

I was able to take her home with me the day I checked out of the hospital. The blood tests did confirm her diagnosis and I mourned again the child I had thought would come to our family. I had dreams and hopes and ultimately a plan for each of my daughters. But that is what they were, MY dreams and MY hopes. The plan for her life will be my Heavenly Father's plan and she will have her own dreams and hopes. She has alrady taught me to look at what this life is really about and that I needed to change some things about myself. I hope I can become what I should be as her mother.