By Mackenzie Slack
Mommy to Caroline
Anencephaly
February 2023
Our journey began with the happiest August ever. The three of us (my husband, son, and I) were overjoyed to find out we were expecting. Our son was 3 when we found out we were expecting, and we were already stressed that there was such a large age gap between them. We had always wanted our kids to be close in age. We knew he would be the best big brother. It also felt like a chance to do things better: to stress less, love more, soak in more of those precious moments. We also found out that our best friends were expecting – only a week difference between our due dates! I was very nervous, but kept telling myself that “good things are allowed to happen to us.”
We were 12 weeks when I went into the OB office. Immediately when the ultrasound came up on the screen you could tell something was very wrong. I got home and sat in this little patch of sunlight coming through the window and just cried as my heart shattered. Something was wrong with this baby I desperately wanted.
Two days later we saw a specialist who confirmed that our sweet babe had a condition called anencephaly. This was due to her neural tube not closing properly. I wondered how on Earth this could have happened – I was healthy and took my prenatals. I did “everything right.”
We were encouraged to terminate the pregnancy, but we couldn’t bring ourselves to do so. She was our baby. We decided that she was worthy of the life – even if it was going to be short. Even if it felt like we were going through all of this for “northing.” In the end – I’m so thankful we made this decision. Because she wasn’t for “nothing.”
We chose to name her Caroline – the three of us each came to the name differently and it just felt right. We later found out that my Grandma Carolyn’s name on her birth certificate was actually Caroline – we had no idea!
For months my husband and I felt like we were drowning. I’m really thankful we clung to each other, as I can definitely see how things could have gone the other way. We tried to make the most of everything. We “over-decorated” for the holidays. Did all the fun things. Included her in everything. It was very bittersweet to know that her firsts would also be her lasts.
We tried to spoil her as much as possible during her time in my womb. She loved hot chocolate and would dance like crazy every time I drank it.
We eventually learned to choose joy over everything else and continue to try to do so.
We had so much fear surrounding her birth. I had severe polyhydramnios (increase in amniotic fluid) and was very scared about possible complications. I had been in labor for weeks when our sweet girl made her way into this world. Labor was extremely hard – mentally and physically. I really wasn’t ready to let her go, but it was her time. She was born alive! I still can’t believe that after everything she endured. She was with us for 84 beautiful minutes and was peaceful the whole time. The three of us sang “You Are My Sunshine” to her. We snuggled and loved on her until she passed.
We then had close family come in to meet her. When my dad came in, he told me that this day was also my Grandma Carolyn’s birthday! So our sweet girl shared a name and a birthday with her great grandma! We knew then that God/the Universe/Whatever you want to call it – had our sweet girl. She was safe. She brought back our faith.
Caroline’s diagnosis, life, and death completely changed us. It’s been really hard since she left, but she taught us so much. I believe we are better people thanks to her. One thing I was really worried about was our marriage – but this whole experience actually brought us even closer.
Our son has had a really hard time adjusting to her being gone. He turned 4 a month after she was born. He bonded with her even more than I thought he would have and misses her very much. It’s hard for a four-year-old to understand death and the big feelings that come with it.
Things feel like they are in slow motion most days. Some are easier than others. At the time I am writing this, she has been gone over a year – which seems unreal. It’s been hard imagining and thinking about all the things she would be doing if she was still here.
Our friend’s little girl was actually born on Caroline’s due date. At first it was pretty painful, but I like to think that they share this special bond somehow. We sure do love snuggling her and their family has brought us a lot of joy.
Our rainbow baby will be here in September, and our son will get to experience all the joy of getting to be a big brother. This pregnancy carries all the emotions – joy, fear, excitement, guilt. It’s a lot more intense than I thought it would be. Caroline is a part of our every day life, so that will continue of course. But she will also be included in our maternity and family photos, which are part of the ongoing services that On Angels’ Wings provides.
We hope that we can honor her for the rest of our lives – both in our home and out in the world by doing what we can to help others. Another hope I have is that people will take a hard look at their nutrition, vitamins, and genetics. Had we known what we know now, we may have been able to prevent this.
On Angel’s Wings has been absolutely incredible. The photographer who captured Caroline’s birth, Rebekkah, is one of the sweetest and most gentle souls I’ve ever met. The support we were given was exactly what we needed. Had we not had this organization, we wouldn’t have photos of the most important day of our lives. While the rest of the world has moved on without us, this organization and volunteers still check on us and remember sweet Caroline with us.
A few months after Caroline’s birth, I felt called to join this incredible cause, and became a volunteer photographer within the organization. To be able to serve and honor these families and provide them with high quality irreplaceable images of their children and them with their children is such a privilege. There are many types of sessions that OAW provides, and each is tailored to meet and honor the family and child where they are in their unique journey.
What OAW does is so important because they are a beacon of light and support in times that feel so dark and lonely. These once in a lifetime moments they share with us, they go fast. To be able to have images to hold on to when your arms are empty is such a precious gift and is truly worth more than gold.
Throughout our pregnancy and after her birth, we quickly learned that most people do not know how to respond to grief, and even more so, do not know how to respond to the joy and love that live within that grief. In addition to providing us with images that we would not have been able to afford otherwise, OAW continued to support us in our grief and in our joy. If you have ever been through child loss, then you know how important it is to honor both. OAW’s inspires hope, healing, and community. They truly believe that our babies are as worthy as beautiful as we do – and that’s all we could ever ask for.
