‘We could see past her imperfections, her peeling skin and bluish tint. To us, she was our perfect baby.’: Parents lose beautiful baby girl to congenital heart defect, ‘We will always have a guardian angel looking over us’

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Disclaimer: This story contains details and graphic images of child loss that may be upsetting to some.

“2018 was supposed to be the most exciting year of our lives. We found out we were expecting a baby girl who would be here in October.

We, probably like many first-time parents, didn’t expect anything to be wrong with our baby. We were thrilled each time we went to a doctor’s appointment to get to know our baby more: hearing the ‘swish, swish’ of her heartbeat, seeing the peanut-like shape of her body for the first time, and finding out that she was a girl.

Woman stands smiling holding ultrasound picture in front of her stomach
Courtesy of McKenzie Powell
Husband stands outside holding wife at gender reveal with pink balloons and confetti at his feet
Courtesy of McKenzie Powell

Our 20-week ultrasound came and the doctor started looking around to check to see that everything in her little body was developing properly. She had all of her fingers and toes, her head was the right size, and her body length was measuring right on track for her due date. Our baby always seemed to have a hand or foot covering her heart, so the doctor had a hard time seeing what she needed to see.

I tried everything to get her to move into a different position. But, after an hour of drinking juice, eating sugary snacks, kneeling on all fours, and moving into every position known to man, she would not budge. We tried coming back into the office a few days later, but they still weren’t able to find what they were looking for. She was a stubborn little one! We were then referred to a high-risk pregnancy unit where they were more equipped to look at her heart.

After this specialist took a look at her heart, he took us into a quiet room and sat us down on the couch. He told us that our little girl had a congenital heart defect called Pulmonary Atresia. My husband wrapped his arm around me and squeezed me tight. The doctor proceeded to show us diagrams of what options would be available for corrective surgery. He reassured us that, even though she would most likely need immediate surgery after birth, she would be fine in utero. It was overwhelming to say the least, but it gave me hope to know that the doctors would be prepared to help her.

Pregnant woman sits in chair wearing bra and underwear holding her stomach
Courtesy of McKenzie Powell

Soon, we decided on a name for our little angel. We would call her Sophie Joi. We were so anxious for her to arrive! At the 33-week mark, we went in for the last check up with the pediatric cardiologist before Sophie’s delivery.

We didn’t expect any drastic changes of Sophie’s condition. We thought they would just tell us that her heart defect was still there and that they couldn’t do anything about it until after she was born.

There was only one ultrasound tech in the room. We were used to a full room of doctors surrounding the screen, whispering about what they saw. I was grateful there was only one ultrasound technician this day. As soon as the technician got the gel ready to squirt on my belly, I was overwhelmed by the most uncomfortable feeling. I felt like I was going to pass out. When I look back now, I realize this was my body trying to warn my mind about what was going to take place. I kept pushing the thought out of my mind that something was wrong with Sophie. When I looked at the ultrasound screen, it looked different than past ultrasounds. The ultrasound tech said he had a bad angle and was going to grab our doctor to scan so he could get a better view. I believed him, but still felt sick to my stomach.

Our doctor came in and we were both chirpier than a bird to greet him. ‘Hi doctor, how are you?,’ we said shaking his hand. Looking him in the eyes though, I could instantly tell he was about to deliver some bad news. He gently said the words no person ever wants to hear: ‘I’m afraid we have some devastating news for you. Your baby no longer has a heartbeat.’ Those words echoed in my mind for what seemed like forever. I went into my own little world and everything was fuzzy. I cannot remember what else he said after that. My husband held my hand tighter and tighter and we sat together crying for a good while. Fear instantly overcame me. I remember crying so hard I could barely speak. Somehow, I was able to say to Spencer, ‘I am not ready to deliver a baby today.’ I was especially saddened to know that I would go through all that pain and not have a baby to take home. But, despite my fears, I knew I had to be strong for Sophie.

Calling our parents to let them know their first precious grandchild had passed away will definitely go down in history as one of the hardest phone calls a human could make. Spencer and I were so grateful for their support even though we knew they were feeling waves of similar pain.

The doctor told us the hospital would call us later that day to bring us in to labor and delivery. Like I said to Spencer, I truly was not ready to have a baby yet. I hadn’t even thought about packing a hospital bag, her nursery was only half way done, and I had just barely sent out the baby shower invitations.

We headed back home, and I stared into the empty backseat. Flashbacks came over me of how excited we would be to put Sophie’s car seat back there. I cried again, knowing that this dream too would not come to fruition. It was a long, quiet car ride home.

We got home and I decided I wanted to take a bath to calm my nerves. As the bath was filling up, I took off all my clothes and stared at my belly in the mirror. I started bawling, knowing that my pregnancy was coming to an end. I didn’t expect my pregnancy to end so soon. We still had 6 weeks left until Sophie’s due date.

Pregnant woman smiles in mirror selfie in her bathroom with shirt raised to show her stomach
Courtesy of McKenzie Powell

We got to the hospital around 3:30 p.m. Checking into labor and delivery was hard. We saw all the other moms checking in at the same time as us with big smiles on their faces. The hospital staff was expecting us though, so they accommodated us in every way possible.

The inducing and labor process took about 30 hours. It was long, painful, heart wrenching – but beautiful. I could not have made it without the help of my husband, he lifted me up at times I had no strength. He let me squeeze his hand when having painful contractions, he looked me in the eyes and knew exactly what to say to calm my fears during delivery, and wiped my tears when I thought I had zero tears left to cry.

Sophie Joi was delivered at 10:16 p.m. She weighed 4 pounds and 8 ounces. 17 1/2 inches long. I loved my birthing experience. It was the closest I have ever felt to Spencer and the closest I have ever felt to heaven. I could feel Sophie’s spirit with me so much, although I knew it was no longer in her sweet, tiny body.

Newborn lays on shirtless mother's chest
Courtesy of McKenzie Powell
Woman lays in hospital bed holding newborn as her husband sits beside her
Courtesy of McKenzie Powell

She was absolutely perfect. They handed Sophie to me and I just held her on my bare chest for what felt like forever. I couldn’t believe the love that I could feel for such a tiny, little being. Her perfect, little features. She had so much brown, curly hair (that explains all the heartburn!). She had her daddy’s nose and her mamma’s lips. Her perfect little lips. I wanted to kiss those lips every day.

Woman lays in hospital bed with newborn on her chest as she smiles at her husband
Courtesy of McKenzie Powell

After the visitors left, we got to spend more quality time with Sophie. Our parental instincts kicked right in. We could see past her imperfections, her peeling skin and her bluish tint. To us, she was our baby and she was perfect.

Father cries as he stands over newborn lying on her back
Courtesy of McKenzie Powell
Father cries as he holds newborn daughter swaddled in blanket in his arms
Courtesy of McKenzie Powell
Close up of newborn with heart defect asleep in mother's arms
Courtesy of McKenzie Powell

Around 1:00 a.m., they took us up to another floor. We were grateful to have a quiet floor to ourselves. There were no crying babies next to us. We decided to try to fit in as many things as we could possibly do with her in the short time that we would have. It was hard to plan all the things we wanted to do with Sophie in the few hours we would have with her, knowing that many of these firsts would also be lasts. But, being as exhausted as we were, we listened to a few songs with her and tucked her into the hospital’s cooling bed, which allowed her to spend the night with us. It was the only time we’d ever get to tuck her in.

The next day was filled with lots of paperwork, funeral plans, and more visitors. The hospital told us to take our time on when we wanted leave. It was so hard to even think about leaving. Sophie’s body really started to go down hill and we knew we needed to spend just a little more time with her and then let her go so we could remember her in her best state.

We spent our last moments reading her a story, played a few more songs that reminded us of her, told her about her wonderful family, and rocked her in her rocking chair some more. We knew our time was coming to an end and it hurt more than ever. Once we felt ready to go, we prayed with Sophie. We knew it was time to go.

We wheeled Sophie down to a cooling room. The hardest part was handing our beautiful baby to the nurse. This baby that had been inside of me for 8 months, the person I had dreamed about becoming my best friend one day, the person I hoped to make so many memories with, and spend my every breath serving and teaching, was gone just like that. Another nurse wheeled us out empty handed. Leaving the hospital without a baby would be on my list of worst feelings to ever feel on this earth. I got into the passenger seat and looked in the empty back seat and everything that had happened literally felt like a dream.

Despite this hardship we faced, we have been changed for the better. We know we will see our Sophie Joi again and cherished the time we got to spend with her. Not one day goes by that we don’t think about her. We try to live a life that she would be proud of and live with Joi even on the hard days. I love knowing we will always have a guardian angel looking over us; sending us down lots of little blessings. Hopefully one day she will send us down a little miracle baby, but until then, I will spread awareness of baby loss and spread the word that you can still live joi-fully, even in a storm.”

Husband and wife stand smiling outside beside bouquet of flowers shaped as heart
Courtesy of McKenzie Powell

This story was submitted to Love What Matters by McKenzie Powell of Salt Lake City, Utah. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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