Kassidy Briana Johnston's Story of Anencephaly

In April 2012, my husband and I were overjoyed to find out we were pregnant. Everything about the pregnancy early on was as expected, healthy, and moving along nicely.

On June 5, 2012, my husband and I went to my doctor for my scheduled 12-week appointment. When they couldn't find my baby's heartbeat on the doppler, I was sent in for an unscheduled ultrasound. Luckily, the technician found a heartbeat. My relief was brief, as unfortunate news followed.

The technician paused and then said, "It appears your baby has an omphalocele. Do you know what that is?" I answered no. She continued to explain that our baby's organs were growing on the outside of its body. I cried and asked if it was fatal. She said not typically, but that I would need to talk to the doctor because the head looked abnormal too.

We were referred to a specialist and the appointment was set for three days later. I was so nervous I couldn't eat or sleep. I researched omphaloceles and the surgeries that could correct it. I prayed for God to save our baby.

On June 8th, we saw that specialist. The hour-long ultrasound seemed much longer, as well as the hour long wait in the examination room thereafter. My husband paced the room, and I sat there convincing myself everything was okay. The doctor entered and said that our baby's omphalocele was severe, and that the hemorrhage of organs was close to the size of baby itself. I looked at her in complete shock. She continued, "...but that is the least of your worries."

She said our baby had anencephaly. Our baby would not survive, and would likely miscarry or be stillborn. I didn't even know what to ask, what to say. This couldn't be happening. I had never even heard of anencephaly before. We immediately chose to carry. Termination wasn't an option. We were believers that God had blessed us with this baby and that we would love her until natural death.

The next few weeks were hard. I was scared for people to ask about it, as I got mixed reactions when I told others I was carrying anyways. I was surprised to get responses such as "why would you do that yourself?"

When I was just shy of 16 weeks, we found out we were having a daughter! We decided to name her Kassidy Briana. Briana is my middle name, and I wanted to share it with her.

I got in the bad habit of counting down though. I was due December 18, 2012 and I would think "okay, I may only have 24 more weeks with her." One doctor I saw had predicted I would lose her before week 28. Another gave Kassidy a 30% change of surviving birth. I was scared, not only to say goodbye to her, but for childbirth in general. Kassidy's omphalocele was still large, and the topic of a c-section was always brought up in my doctor's appointments. I wanted to avoid a c-section so that I had an easier recovery and could increase my chances to deliver future children this way. Many anencephaly moms opt for c-section to increase chances that the baby may survive birth. I prayed about this, as I was unsure of the right thing to do. If it be HIS will for me to have a c-section, it will happen that way. I read a lot of blogs by anencephaly mothers and got comfort knowing I wasn't alone.

Around week 30, I also found out that Kassidy only had two chambers in her heart... a heart defect. I was devastated. My baby girl had three abnormalities...

I spent my pregnancy taking pictures of my belly, talking to her, journalling, and preparing my hospital bag to ensure I had supplies to do memory making crafts and activities with her. My mom bought her a lovely baptismal gown, I bought a pink dress, I had blankets for her, a teddy bear made for her, etc.

Before I knew it, it was Halloween. I painted my belly to go with my costume and was handing out candy to the trick-or-treaters. I couldn't help but notice I was having contractions. They were becoming more frequent and I couldn't really keep track of them. I was teary-eyed that night because I knew Kassidy would never get to trick-or-treat.

I woke up November 1st with an awful pain in my back. I bounced on an exercise ball but got little relief. I began to vomit from the pain, and the contractions continued. My husband came home from work and we went into the hospital. We found out that I was 1 cm dilated, but I was only 33 weeks and 5 days along. The nurses said they wouldn't stop me from laboring because of my baby's condition (typically before 37 weeks they would stop it). I went home that afternoon since I needed to be 4cm dilated to be admitted.

On November 2nd, I was admitted because I was leaking amniotic fluid. I wasn't dilated anymore, probably since Kassidy's head was too small to exert enough pressure on my cervix for dilation. The nurses did a few ultrasounds, each time finding Kassidy's heartbeat and then measuring the size of the omphalocele. Turns out, I would be able to attempt a vaginal delivery. The hospital's ethics committee wouldn't let the nurses induce me until I was 34 weeks along, which was November 4th.

Time flew by, and as the clock ticked over to bring on the morning of November 5th, I knew it would be her birthday. They checked for a heartbeat, found it beating away at 135, and told me it was time to push. I began pushing at 2:20pm, and Kassidy was born at 4:16pm. I saw the doctor hand her to a nurse to wrap her in a blanket, and I asked, "is she breathing?" No one answered.

She was stillborn, and absolutely beautiful. She had passed away sometime while I was pushing.

Her blue eyes were wide open. She had my nose and lips, as well as my husband's hands and feet. Two of her fingers were crossed (which we learned was common in anencephaly babies) and both hands clenched together. With a hat on, she looked like a baby with a normal skull.

I have never felt so much happiness and sadness at the same time. We baptized her and dressed her in a white satin dress. Every hat and dress we had was too big. Kassidy was 2 lbs, 11 ounces and 12½ inches long. Our little doll.

I recall sitting there, holding her, and praying "Thank you God, Thank you for Kassidy."

A photographer came in and took photos of our precious memories with her. Family and friends visited, as well as our priest. I knew everything happened just how it was supposed to. Once the room cleared of our visitors (at about 11pm), I wrapped her up in a blanket, hugged her against me with my left arm, and fell asleep for 5 hours straight. I've hadn't slept that well since diagnosis day. It was as if I felt relieved that she was home with God, where she was meant to be all along.

I awoke to my delivery doctor returning to check on us. We had bereavement workers come, we called the funeral home to arrange her pick up and packed our belongings up. The hardest thing was leaving her there, empty handed.

Kassidy's funeral was on November 10th. We got to see her one last time and add a few personal items in her casket. She was just as beautiful on the day of her funeral as the day she was born. My husband and I wrote a special note on the back of a photo of us, laid that with her, along with a single white rose.

Looking back, carrying to term was one of the best decisions I have ever made. I would do it again in a heartbeat. My husband and I participated in a Duke University Study that focused on the Psychological Impact of Carrying to Term. Over the past few years, I have also met with 2 other mothers of a baby with anencephaly in the Phoenix, AZ area. I email and reach out to women who receive this diagnosis regularly. If I can help you, please email me at kelsjohnston@yahoo.com.

Update:
Stevie and Kelsey now have four healthy children named Steven, Beau, Paige and Adalee. They live in Mesa, Arizona.

Last updated December 21, 2023