Your sister has anencephaly
I was so sad to tell my children that their little sister had anencephaly and wouldn’t survive. We had had a cold, rough April, and now, on May 4th 2022, my kids were all happily enjoying the outdoors when we finally arrived back home. We were still waiting for my oldest daughter, but I couldn’t keep it from the rest of them any longer.
With them gathered all around me, I said, “Our baby isn’t going to survive after she is born.” It’s a challenge to explain this to all of them without leaving the little ones behind. My younger children were three, six, eight, ten and Timothy (Down’s syndrome) had just turned thirteen. He is very developmentally delayed, and would really struggle to understand. He just stared at my face as I cried. My oldest daughter then came into the camper and immediately saw our faces. I could see the ache and fear in her eyes as she rejected all thoughts that there was a problem with our baby. I knew she wanted to run back out. We talked and cried and hugged and deeply appreciated being together as a family.
Anencephaly and processing our emotions
After a couple of hours, I told the kids, “I want you to grieve however you need to grieve. You don’t have to pretend you are happy when you are sad. You don’t have to pretend you are sad when you are happy. It’s okay for you to be real.” This was the first beautiful spring day we had had up in Minnesota. I encouraged the kids that they could play or work as they wanted to.
We really cherished those two days at home as a family, feeling our baby kicking and moving around in my belly. It was hard for me to believe she truly had anencephaly at all when I could feel her inside. It was so sad for me to plan her c-section, knowing she couldn’t survive without me. The new hospital staff called me to discuss details, and the tenderness in their voices was so touching. It was such a blessing that I switched clinics.
Preparing my body, preparing my heart
I went to a health food store to get a couple of supplements to help me build up my blood volume. While I was in there, someone asked me, “When are you due?” “My c-section is tomorrow,” I replied. “Congratulations!” she said, “Do you know the gender?” “It’s a girl,” I answered. I just smiled, knowing her intentions were sincere, but a sadness was aching inside.
We had a wonderful support group of friends and family. Many packages and notes of love and prayers were sent our way. We knew that God was capable of healing our baby and performing a miracle; but we also knew that He doesn’t always choose that path. We believed for the miracle and trusted His decision. I had peace in my heart that He knew best. We had no idea what to expect. Would we get to meet her? Would she stay alive for a few hours? What would she look like? Hopes and prayers swirled around in my mind.
Anencephaly and tenderhearted staff
The hospital staff had a policy in place that only allowed 1 or 2 visitors at a time in my hospital room after surgery, and only 1 person to be with me during surgery. Upon hearing our story of anencephaly, they opened up their policy to allow both my husband and my midwife to be with me during surgery, and later, my entire family to join us in the hospital room.
I had never had a c-section before and I was nervous. The hospital staff tried several times to encourage me to try a natural birth. They were so nervous that, with my age (44), I would lose too much blood and my life would be in danger. However, I did not have peace about that. I had been going in and out of labor for several days already, and I figured, with her having anencephaly, there would never be enough pressure on my cervix to dilate. I felt that to try for a natural birth would be exhausting for the baby and I and would end in a c-section anyway after hours of struggle. Also, I was hoping we would get a better chance of meeting our baby if we gave her a gentle birth. We had perfect peace that we were choosing the best option.
A birth and a death
She was born at 1:09 pm. I had lost less than half the blood as the average c-section. Soon I had my little bundle laying across my chest. My husband and I held her and told her we loved her and we were sad she couldn’t stay with us. My midwife took pictures. I never felt her move or heard a sound. No little baby breaths on my neck as she lay there. The nurses wrapped her in a blanket and put a hat on her and did a wonderful job making her look as normal as possible for the children to see her, and we were sent back to my hospital room where my mom, children and sisters-in-law were waiting.
A beautiful time with our baby
The staff was AMAZING and so supportive. They had arranged to have a volunteer photographer come in to take pictures for us. Each child got a chance to meet and hold their baby sister. I wondered if they knew she was not alive. With the hat and the blanket, they couldn’t really even tell she had a birth defect. It was so beautiful and sorrowful all at the same time. Each child taking their turn to meet her and yet say goodbye as well. I watched, as the older children helped the younger children. Then, my husband helping my youngest to get her turn as well. How old she looked all of a sudden!
Peaceful Rebirth
We chose the name Shalome Renae, which means Peaceful Rebirth. I didn’t realize yet, that Shalom even further means “complete, nothing missing.” As I was grieving that she was not to be born to us… she was, in fact, being born into New Life with the Father, and was now perfect and whole; with nothing missing.
Wrapped in the Father’s comfort
For each of my babies, my mom usually crochets me a baby gift (blankets, hats, sweaters, booties…). This time it was a gorgeous, (heavy) rainbow blanket. I brought it with me to the hospital and stayed wrapped in it. It was very much like a weighted comfort blanket for me for many weeks to come. My faith was a deep comfort to me during this time. Trusting and knowing, that my Father walks with me and supplies all of my needs for each day as it comes. I knew I would need His comfort and wisdom to navigate this loss and also help my children process their emotions as well.
Processing anencephaly in my own way
After a couple of hours, everyone left me to rest and my husband and I took turns holding her. I slept with her all cuddled up next to me. After awhile though, it felt so strange to be holding a body with no life. I didn’t feel like I could put her down. Would that look like I didn’t care? It was a struggle for me to just be real and not worry about what those around me would think. The next day, especially, it felt more and more like I was holding a doll. I had begun putting her down in her bassinet for a time so I could rest more fully.
The nurses thought to cut a lock of her hair for me and put it in a tiny bottle, and also managed to get her little foot prints. That second evening, after saying good-bye one last time, we allowed the hospital staff to take her away. We had opted to have her cremated so that we could bring her back home with us to Arkansas. I never removed her hat. I didn’t want to remember her by her birth defect.
Recovering as quickly as I was, the staff offered to let me go home early. I chose to stay a second night though, as I knew the many little people that would be vying for my attention back home.
Helping Timmy to understand
Thankfully, with today’s technology, I was able to FaceTime with each of my children that night and told them that I would be coming home the following morning. Timothy signed “Mama, home… Daddy, home… Baby, home” and I said “no. Mama, home, yes… Daddy, home, yes… Baby, home, no.” I could tell he was trying to process that. How could I help him to understand? I knew I couldn’t tell him “baby owie” because he gets owies too. If I told him “baby sleeping” he might fear sleeping or Mommy sleeping. I prayed the Father would help him when the time came for me to go home without our baby.
A flood of compassion
Being wheeled out of the hospital, passed all of the staff with their loving sympathy, is an experience I will never forget and could not have been prepared for. I am so thankful for their amazing facility and staff. Despite what I was going through, there were so many little blessings from the Father that really touched my heart in the days to come…
(click here for part 3)
(read part 1 here)
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