“A mother should be able to kiss her baby goodnight, not goodbye.”
Charlie Aikman, Trisomy 13, 12/01/2016 to 12/01/2016, Washington, IN
I saw 2 pink lines on a pregnancy test on 7/12/2016. I couldn’t believe it. I had spent the last couple of years thinking I would never see a positive pregnancy test again in my life. I instantly fell in love with my child that was growing inside of me. I was anxious to go to my first doctor’s appointment to see the baby and hear a heartbeat since I didn’t get to even do that with our first pregnancy.
The day came and went of the first appointment. We saw our beautiful baby and heard the strong heartbeat. It was the most beautiful sound we had ever heard. Each appointment we got to hear the heartbeat, and it was always my favorite moment. My child was growing and alive and well.
My 20 week appointment to find out the gender of our sweet babe did not go well. The technician noticed abnormally low amniotic fluid and a lot of fluid on the baby’s brain. She got the doctor and the doctor was concerned. There was something wrong with my baby. Something so wrong that the doctor couldn’t diagnose it with her experience. She thought maybe the baby didn’t even have kidneys. I was referred to a specialist the next day. We didn’t even get to find out the gender that day. The next day at the specialist we had such a long ultrasound. Our sweet babe did in fact have kidneys, but wouldn’t show his/her face. He/she kept his/her little hands up over his/her head. The doctor was looking for a deformity with the baby’s thumbs, but the hands were closed tight into fists. Then all of a sudden our little one popped both of his/her hands open and gave us all a wave. I fell even more in love. Our baby was moving and waving and perfect. The doctor was certain our baby just had hydrocephalus which would mean surgery at birth. This could cause mental and developmental issues, but we would still have our baby alive and healthy otherwise. We were ecstatic about that possibility. The doctor preformed an amniocentesis that day to get the full result of what was causing the fluid on the baby’s brain. The doctor thought we were having a little girl! Adeline Grace was going to be her name. We had to wait over the weekend to get any results.
The next Monday, 11/7/2016, we were at a different hospital with my mother-in-law while she had a knee replacement surgery. We were waiting for her to come back to her room from recovery after the surgery when the geneticist called with the early results from the amniocentesis. We were told that our baby had surprised everyone. Our baby had a rare chromosome disorder. Trisomy 13, also know as Patau’s syndrome. The result and prognosis? Not compatible with life. I was gutted. Standing in the hospital hallway, I couldn’t stop crying. A sweet nurse offered a hug and condolences. I felt sick and terrified for my beautiful baby. We were to meet with the geneticist to further discuss the diagnosis a few hours after she had called. I went back to the room where my husband was waiting for his mom. Her doctors brought her in right after I walked in. I didn’t even get to tell him the news. The nurses got her settled in, and he and I went to go outside to talk about the phone call.
We met with the geneticist that afternoon. While she was explaining the Trisomy 13 we asked if the testing showed if we were having a boy or a girl since the doctor was not positive the Friday before. Adeline Grace turned into Charlie Robert within a matter of seconds when she confirmed our little one was a boy! My beautiful boy, my sweet son, would not live. They planned to induce me at 34 weeks to avoid any complications. I was scared and devastated that I had to tell my son goodbye before he even got here.
A few weeks and more appointments passed. We went on a vacation to Gatlinburg, the first and only vacation Charlie would ever get to attend. We wrote our 3 names on the wall of the Mountain Lodge diner. We saw shows. We bought a Christmas ornament with Charlie’s name on it. Then it was thanksgiving weekend. I started swelling very badly. I gained 15 pounds in 10 days. I called the doctor 11/28/2016, Monday morning, and they told me to come in right away. After an ultrasound to check Charlie and his heart, they did some lab work on me. Charlie was fine. His heart was perfect and beat so strong. I, on the other hand, was not doing well. My body had become toxic from the pregnancy. I had preeclampsia. My blood pressure was through the roof, and it was affecting my liver and kidneys already. The only cure to save me was to deliver my son.
I was 23 weeks and 6 days pregnant when they admitted me to induce labor. 80 hours after they started to induce me, my son finally decided it was time.
I gave birth to Charlie 12/1/2016 at 9:24pm cst. The day before his daddy’s birthday. He weighed 1 pound 7.5 ounces and was 12 inches long. His eyes were closed, he had a cleft lip, he had 6 fingers on each hand, 6 toes on his right foot, 5 toes on his left foot, and was still covered in the downy hair. He was perfect and so amazingly beautiful. The nurse had to deliver him because the doctor hadn’t made it to the hospital yet. The nurse confirmed that Charlie did not have a heartbeat. I held my son and felt relieved that he was finally there after 80 hours. After everyone left the hospital we gave Charlie a bath. I couldn’t sleep that night. I wanted it all to be a dream. I wanted to still be pregnant. I wanted my son alive. I held my sweet boy for almost 2 days before I was discharged and he was sent to the funeral home. A mother should be able to kiss her baby goodnight, not goodbye. I had to leave him with a stranger while I walked away from him. I would never seen my son’s face again.
Now that Charlie is gone the silence is deafening. There is no crying baby to wake me up at night. There is no soft coos of a sleepy boy laying on my chest. Everything is silent, except for my brain that is screaming in desperation every second of the day.
I know Charlie would have had multiple disabilities, and there is some peace in knowing he will never know pain or discomfort. I love him regardless of his diagnosis. Love doesn’t count chromosomes. He was pure perfection to us. No one has ever wanted anything, more than we wanted him.