My name is Courtney and I’m here to tell my story of having HOPE.
My husband Bryce and I met in March of 2018 and got married in November of 2019. We found out we were pregnant on Thanksgiving of 2019 and announced to our parents and family members on Christmas that we were expecting. Everything was perfect for the whole pregnancy between all the doctor’s appointments and ultrasounds. It was on March 24th, 2020, our lives completely changed.
We went in for our 20-week anatomy scan ultrasound to, again, verify baby is growing as should be and were very much looking forward to getting the results placed into an envelope for our gender reveal party that we planned with friends and family a few days after this appointment. As my husband and I were trying to follow along with the anatomy scan, we noticed 10 tiny fingers and 10 tiny toes. The baby’s heartbeat was so strong and just pumping along. The arms, legs and belly were all measured and everything was perfect with our little bundle of joy. When the ultrasound tech got up to the baby’s head, it seemed like there were way more measurements being taken than the rest of the body. My husband didn’t notice anything wrong, but something seemed off to me. I had asked the tech if everything looked okay and never really got a response. It was shortly after that she had stated she was going to go get the doctor for another look. When she left the room, it seemed like it had gotten so much darker. It seemed like time was frozen and taking forever for the doctor to come back in and see us. I told my husband something wasn’t right, but he assured me everything would be just fine.
One of the high-risk doctors at the hospital came into the room where my husband and I were anxiously waiting. He ran through every part of the ultrasound very quickly amongst himself and came back to the baby’s head. At that time, he stepped away from the computer and sat on the chair. He looked at my husband and I with great sadness and announced that we were having a baby GIRL, and he was diagnosing her with Anencephaly. My husband and I had absolutely no idea what he had just told us. What we did hear, is that our daughter would not survive no matter what we did. All I remember about that day is being utterly and completely numb from head to toe. People talking around me, yet I couldn’t make out a single word. My husband was in the corner bawling his eyes out and I just sat there completely still-and numb. The only thing I truly remember being in that dark room was being told it was recommended that I terminate the pregnancy because she wouldn’t make it, however we had all the time in the world to make the decision.
Anencephaly is a neural tube defect where a baby is born with an underdeveloped brain and incomplete skull. This condition affects a baby’s nervous system, which includes the brain, spine and nerves. It happens when the neural tube (which is responsible for growing the brain, skull, backbones and spinal cord) doesn’t develop or fails to close as it should during the first month of pregnancy. A baby born with Anencephaly might be stillborn or survive for only a few minutes, hours or a few days after birth. Statistics state that Anencephaly is 1 in 10,000 and is very rare.
With all this new information, we left the hospital and all I wanted to do was be with my mom and dad. My husband called his parents and told them to meet us at my parents’ house so we could go over all the information that was given to us. We spent the afternoon on the phone with one of the nurses and a doctor from the hospital.
So. Many. Questions.
As I stated prior, before we left the hospital, we were told we had all the time in the world to decide whether to terminate or continue the pregnancy. While on the phone, we were told that we only had 24 hours or so to decide; as South Dakota’s laws at the time were 21 weeks to perform an abortion. What a short timeframe to make such a long-term decision. We were also informed that other surrounding states had longer timeframes. With Minnesota’s border being right around the corner, we were informed their timeframe was 23 weeks gestationally. That gave us a little bit more time to let everything marinate.
We left my parents’ house after the long dreadful conversation on the phone. We were passing the mailboxes when my husband looked over to me and said, “All I know is we can not lose hope.” In that very moment, we realized our daughter had named herself.
Hope Marie Vining.
Given all the information and research we did, we ended up deciding to terminate and had an appointment scheduled with a doctor in Minnesota for a few weeks. It just seemed like the best option for our family at the time. A couple nights before the appointment, I remember walking downstairs and seeing my husband at the kitchen sink doing dishes. I walked up behind him and told him I couldn’t go through with the termination and wanted our daughter to go on her own terms. I couldn’t fathom taking her life away when all I could feel daily was her kicking me nonstop with so much life inside my belly. I knew she was safe there and wanted her to be safe for as long as possible. The very next day, I made the phone call and cancelled the appointment.
For the entire rest of the pregnancy, it was her kicking that told us she was still okay and living. We told her every single day,
“Just Keep Kicking”.
I ended up being diagnosed with severe polyhydramnios, which is a condition that occurs when there is too much amniotic fluid in the amniotic sac. This is due to the baby not swallowing and absorbing amniotic fluid normally, which is very common with fetal birth defects. With this, I could get surgery (amniocentesis) where they drain extra amniotic fluid which carries its own risks including premature birth, breech birth, placental abruption or dangerous umbilical cord positioning.
As we were getting closer to the due date, which was August 5th, my doctor was asking more and more questions on my birth plan. The main part of my birth plan was to have a natural vaginal birth. I didn’t want any medications or epidurals and especially didn’t want a caesarean section. My doctor was sort of pushing towards a c-section due to Hope not having a skull and the weight in her head to be able to push down the canal on her own, which could cause many more issues. I stuck to my gut during each appointment and continued to state I wanted a vaginal birth.
It was Tuesday, July 21st, I went to the hospital due to having contractions. Being my first pregnancy, I had no idea what to expect and ended up being told it was just Braxton Hicks contractions. While we were there, I had been asked if I wanted to be induced since I was considered full term being 37 weeks. At that point, I was miserable and so uncomfortable from all the extra amniotic fluid. As much as I wanted Hope to come on her own, it was in my best interest for my body, to proceed with the induction. My husband and I were moved into a delivery room for the night and started the induction process.
Luckily, I was able to have my husband by my side this whole time as it was right in the midst of the 2020 Covid outbreak. There were multiple appointments that my husband missed due to this throughout the pregnancy and was told he may not be able to be there for the birth of our baby. The hospital ended up making an exception due to our situation and thankfully they did because 2 days later on July 23, 2020, we welcomed our first-born daughter, Hope Marie Vining. With no epidural, as she was making her appearance, she gave me one final kick and it was the greatest feeling of all time before we got to see her sweet little face. She was born at 4:36 pm and was 4 pounds 13 ounces. She made it to 38 weeks and 1 day gestationally. The only thing my husband and I both wanted was to be able to meet her alive. Hope lived a total of 90 minutes and passed away in our arms holding each of our fingers at 6:06pm. She knew nothing in life, but love. The PRISM team at the hospital were so accommodating to her needs, making sure she was safe and snug for her whole life.
The hospital allowed us to have grandparents come up and meet her, two by two, as long as my husband left the room so there weren’t too many people in there at the same time. We were extremely blessed they allowed this for our family. Hope was also able to stay in the room with us overnight using a unique device called a cooling cot they provide for grieving parents, while I was still recovering. The next day, I was discharged.
Before we left the hospital, there was a lady, Kristen, from the funeral home who came to talk to us about Hope’s cremation. In some way, shape or form, there was a discussion about taking Hope home, so she was able to see her nursery we had all set up for her. To this day, I have no idea how this was even possible or how it came to be. To some people, its very disturbing, but to our family, it was the complete opposite. Kristen had told us that she would carefully take Hope back to the funeral home that Friday and have her embalmed. She would then bring her to our house the next day and we could spend the weekend with her. In the short amount of time we had, we planned a whole celebration of life for miss Hope Marie with our close friends and family. With her nursery being on the 2nd floor, we gently laid her in her crib for anyone who wanted to meet her. Downstairs was a safe place that we had filled with lots of memorabilia, trinkets and quotes in honor of Hope. Sunday morning, my husband and I were able to spend some time privately with Hope before putting her in her car seat and bringing her back to the funeral home to be cremated.
March 19th, 2022, we found out we were pregnant again. I have never felt so much anxiety in my entire life. Along with being scared, excited, and positive, we continued through the pregnancy with nothing but hope. Fast forwarding to November 18th, 2022, we welcomed our rainbow baby boy, Coda. It is absolutely crazy to see the resemblance of his big sister in him. Her light definitely shines through him. We will now be welcoming our pot of gold baby, another baby girl, Peyton Marie, who’s due February 11th, 2025. We know that their big sister, Hope, will be watching over them for the rest of their lives. Although she’s not physically here with us, we know that she is everywhere we are and will continue to guide each one of us through our own journeys. Bryce and I will continue to spread awareness for Anencephaly, Neonatal and Infant Loss Awareness and will never stop saying her name.
We love you, Hope Marie; You will never be forgotten.
Photos taken by Katie Kelderman.
Find out more about Project Finding Your Rainbow.
Bryce also shared the story on the Finding Hope After Loss Podcast.
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