In America, and I am sure other parts of the world, infant and pregnancy loss is taboo – and I get it. Babies shouldn’t die. It goes against everything we understand as humans and can cast a shadow of fear across us like nothing else. But babies sometimes die and we owe it to their parents to make the topic easier for them to talk about.
I remember when I first lost Chloe, talking about her and pregnancy loss to other people was hard. They got visibly uncomfortable and said some uncomfortable things. It made me feel like I was alone. It made me feel like I couldn’t talk about my baby without sacrificing the comfortability of others. This is what pushes me to talk about infant and pregnancy loss on my platform. It’s something I want to help people get comfortable with. Most parents who experience this loss want to feel loved, supported and most importantly understood. They want to talk about their babies without VISIBLY making others uncomfortable, because even though their babies died.. they still love these babies immensely and a lot of them want to share their stories.
As a bereavement photographer, I have the privilege of hearing so many brave stories of infant and pregnancy loss across the Salt Lake City area. We have so much strength from parents in this community and I am honored to be able to help these families document something so private for them. And I am honored when I get the opportunity to share some of these stories.
Amaja recently reached out to me to document the birth of her baby at 19 weeks. Here is her story:
“On October 7th 2020 I got the shock of my life. A routine medical checkup led to a nurse breaking the news that I was pregnant. Emotions rushed over me that words cannot adequately explain. For years I believed I would never be able to have children. I had tried in a previous marriage and was told it would most likely never happen for me, which was crushing as I have always dreamed about being a mother. I eventually found it in myself to accept this as part of my life and would love my doggy children as much as I could. That is until fate hit at this late Wednesday morning appointment.
I was advised that I would need to make an appointment with my normal doctor. I did the things most people do, called my mom from the parking lot sobbing as I felt these rushes of emotions take over me once I was finally alone. I texted my boyfriend Austin “I just came up pregnant” not knowing what his reaction would be as this was not suppose to be in our cards. I then drove home and pulled out my old pregnancy tests from under the sink, and even doordashed one from Walgreens just to be safe. I did 3 tests while Austin sat on the bed waiting. Positive, positive, positive. He then drove me to my doctor’s office where they did 3 more positive tests and drew my blood. This was real, we were pregnant, and there was no doubt about it.
Our next few weeks were filled with excitement and coming to terms that we were going to be parents. We bought our first onesies at BuyBuyBaby, told our closest friends, and started looking at names. While I was beyond excited I can’t lie, I didn’t know If I could do this. I didn’t know if I could raise a tiny human. It didn’t feel real, like all my dreams were coming true but they were just that, dreams. A dream that I was eventually going to wake up from.
At 9 weeks was the first time seeing our baby. Just a tiny little bean but they were so active, the doctor even commented on their little dance moves. This was also when we first heard their heartbeat. I held it together, but I could see Austin’s eyes well up with tears behind his COVID mask. We had decided to do genetic screening known as the NIPTs test a week later. This screens for genetic abnormalities such as Down Syndrome, but also determines gender of the baby. I wanted a boy. They say that if you have a girl they will be 10x times worse than you, and knowing my younger self that would not be ideal. Austin wanted a girl, he wanted a princess that could be wrapped around his finger. After a long week’s wait we finally had our results. Baby was low risk for any genetic condition, and we were having a precious baby boy.
We named him Grayson Daniel Mikal Campbell. Grayson was simply a name we liked, but his two middle names were much more meaningful. Daniel is my father that passed away when I was a young child. Mikal was a police officer that helped me out of my darkest times as a teenager and took me under his wing and became a father figure to me that I was lacking until he also passed away in 2018 from a tragic drowning accident. It was important that my son had these strong names and that he knew his guardian angels were always with him.
More weeks went by. I was still struggling with knowing how to become the mother I wanted and needed to be. I also felt that I lacked connection with my baby. I started to show a little bit but couldn’t feel him move since I was still early. Just before Christmas we had another doctors appointment that went very well, our baby was healthy and growing. We spent the holidays with both our families and they were so excited about our growing family. Grayson is the first grandbaby on both sides, so this was a big time for everyone involved. This time was a big time of growth for me. I finally felt that I could be excited for my baby and be connected to him. Around New Years Austin and I decided to go to Fetal Fotos ultrasounds to see Grayson a little extra and to try them out. Our technician Emily was so sweet and excited for us showing his little arms and legs. I noticed that she was taking extra snapshots of the ultrasound which seemed odd. She left the room for a minute and came back. Once she entered the room again she had questions about when the last time we saw our doctor was and if everything was ok, which of course it was. She let us know that although she was not a medical professional she did notice that something did not seem right. It appeared that some of baby Grayson’s organs may be outside his body. My heart sank.
The very next day we were back at our doctor’s office. They did an ultrasound again. If you can imagine a baby’s ultrasound it basically looked as though Grayson had a balloon coming out of his little tummy. Our doctor let us know that there are two main conditions when they see this type of thing. Gastroschisis is when the baby has a hole in their abdomen and their stomach, intestines, or other organs are free floating outside their body during development. Omphalocele is also caused by a hole in baby’s abdomen however the organs are contained in a sack outside the body. Both of these meant that upon birth there would need to be several surgeries and a recovery process that often takes years, but it was very treatable. Holding back tears I asked if my baby was going to die. The doctor gave me that “oh hunny” look and assured me that while the beginning of his life would be hard, he would survive and live a healthy life. He was also referring us to a specialist that would help us the rest of the way. The appointment was to be in about a week and a half.
Waiting was the worst. We kept telling each other that everything was going to be ok. That we might be in the NICU for several months or that we would have to come up with funny stories about why Grayson didn’t have a belly button. We were so eager to see the specialist so we could get an official diagnosis and a plan of action. Finally the day came. We had the sonographer come in and do the long ultrasound where they measure everything from baby’s limbs to blood flow to how organs are developing. She got what she needed and took it to the doctor. After another long wait we finally met our specialist who hopped on the ultrasound machine herself to have another look. I asked her if it looked like omphalocele or something else, to which she replied “something else”. Once she shut off the machine she let us know she had concerns for Grayson. It was clear that his right foot was clubbed, and while it was too early to tell exactly how, his brain was not developing normally. His hole in his abdomen was larger than what is typically seen in gastroschisis, because of this his stomach, intestines, and liver were outside his body. With the size of the hole and the fact that his liver was out, our sweet baby Grayson was diagnosed with a severe and lethal case of gastroschisis. I don’t remember much after this, but I’ve been told I screamed. I asked the doctor to leave us be for a few moments while I lost it in Austin’s arms. Once I got it together somewhat the doctor came in and gave us our options. We could abort the pregnancy and not see him, carry him to full term for him to live a few minutes, If at all, or be induced early. We could have the weekend to decide. We left the office hand in hand until we got to the elevator. Austin who had been so strong for me throughout all of this collapsed on the elevator floor in tears hyperventilating. Our worst fear of waking up from this dream was realized, only now we have woken up to our worst nightmare.
I was induced on January 28th 2021. Grayson Daniel Mikal Campbell was born sleeping at 7:02 am weighing 4.66 ounces and 7.2 inches long. I was 19.5 weeks along. We chose this so he would never experience pain and we could have the chance to hold our son. While the pain of losing him has been nearly unbearable, this tiny baby has shown us how much love and beauty there is in this world. All those that have been involved have shown nothing but compassion and empathy. Holding Grayson left me wondering why he could not have the chance to grow up like other children, or why this would happen to us. However it also showed me how much I can love. He has given us a reason to live each day, to be parents that can honor Grayson. We know that our precious angel baby boy will always be with us and watching over us.
We are so grateful that we have his photographs taken in our delivery room. We initially were hesitant to have photos of him taken as he was so tiny. We decided that we would take them and maybe put them away until we were ready to view them again. This hasn’t been the case for us. We are so proud of him that we happily share them with anyone that wants to see. One day we hope to share them with his younger siblings. This experience has been one we will never forget, and we’re grateful that we can share his memory forever.”