FOREVER IN OUR HEARTS
JULIET FRANCINE HAYES
Our daughter was a miracle baby. When I found out I was pregnant at 39 years old, I felt extremely excited, anxious, and more than anything, lucky. My husband and I weren’t trying to have a baby. We left it up to fate. I wanted so badly to have a boy (only because I thought it would be easier at our age). So, when I found out I was having a girl, I started looking at "girl stuff;" clothes, toys, room decor, etc. Just like that, I was convinced that having a girl would probably be the best thing that could happen for me. It was.
From the moment they put her on my chest in the delivery room and every day after that, I thanked God for giving me a little girl. My mini me, my BFF. I remember thinking “do all moms feel this way?” Had I known what this feeling was like, I would have had 10 of them. She was perfect! Blonde curly hair and blue eyes born on 7-21-2018 at 12:29pm, 7 lbs. 7 oz. 19 inches. She was an angel from day one.
Juliet's entrance into the world was eventful, and the next day her pediatrician discovered that she had a hip displacement. As a new mom I was scared and emotional, but her pediatrician assured me that she was going to be alright. Juliet was in a harness for three months to keep her hip in place, but on October 29, 2018, the harness came off for good, and by Thanksgiving of 2019, Juliet started walking on her own.
From then on she couldn’t be stopped. Juliet was a strong little girl. She fought me every night to go to sleep for fear that she might miss out on something, but woke up every morning with a smile. She was a sweet, happy, silly, smart, goofy child. Elmo was everything to her. We have Elmo in all different sizes. Sesame Street, Daniel tiger and Paw patrol were some of her favorite shows to watch. She loved animals (especially her dog, Romeo) and music. I always thought she would do something with music or animals in the future. She loved Disney movies and started learning some of the theme songs. She would sing and dance along in front of the television. She loved people and was always drawn to other kids. Most of all she loved her family. She knew who belonged to her. She touched the lives of everyone who knew her.
On Wednesday, September 17, 2020 we started out the day with our regular routine: speech & physical therapy. I had no idea what was coming. After PT she seemed a little out of it and had a slight fever, but no other symptoms, so I started her on Tylenol. When we woke up the next morning, she had no temperature, but slowly it appeared as low grade -- eventually hitting 100.1. I alternated Motrin & Tylenol all day and Juliet was still acting like the goofy kid she was, dancing and singing in front of the TV. By Friday morning, when her fever spiked and symptoms became severe, I knew we had to bring her to the emergency room.
After explaining what happened to the doctors at Staten Island University Hospital, they assumed she had a seizure from her high fever. Several tests were done, all coming back negative, so they performed a spinal tap & brain scan and Juliet was admitted to the Pediatric ICU. It was soon confirmed that she had a brain bleed -- what we would later learn is known as Cerebral Pontine Hemorrhage -- and needed to be sent over to Cohen Children's Medical Center by helicopter immediately. I couldn’t believe what I was hearing.
How did this happen? Why did this happen? She was fine this morning.
It was at Cohen's that doctors determined Juliet's condition was more serious than we had ever anticipated. Just 45 minutes into arriving, a surgeon came out to tell us she had too much pressure on her brain. It wasn't allowing fluid to get to her spine and parts of her brain were damaged. Juliet wasn't stable enough for an MRI, and we needed to agree to a procedure that would drain some of the fluid surrounding her brain. If we didn't, she may not survive.
About a half hour later, the doctor came in to tell me that the parts of the brain that were damaged were the parts that tell her to breathe, talk, walk, and eat on her own. She would never be able to do those things on her own again and he was fearful that she would not survive. "Start praying for a miracle," he told us. "Doctors are wrong all the time," I thought to myself. I started singing to her and playing music at her bedside. "God is too good -- he's not going to take my baby girl."
After hours of tests, treatments, and so many prayers, my baby girl couldn't take anymore. She went into cardiac arrest with my husband, my sister, and me at her bedside. The team immediately started working on her and got her pulse back. The doctor came over to me and said, “Mrs. Hayes, I just want to explain to you what happened to Juliet. She is stable right now but there’s a good chance this is going to happen again. It’s up to you. We have two choices. We can let her go peacefully or we can resuscitate again”.
I looked at her and said, “I don’t wanna make this decision. Call me crazy, but I’m praying for a miracle until her last breath”. I looked around the room for the adult to help me make this decision and realized I was the adult. Juliet went into cardiac arrest again soon after. They started CPR again but were having a hard time getting her back. I couldn’t watch her suffer anymore. I thought to myself “what kind of life would she have if they did get her back? She’d live on a machine unable to even open her eyes or breathe on her own.” So, I looked at my husband and my sister with the blurriest eyes and heaviest chest I said, “I have to let her go”. I grabbed the doctor and just said, “Enough!” We had to let her go. I lived out my worst nightmare.
Juliet made it so easy for me to be her mom. I often thought “how did I get so lucky to have such a perfect little girl?” I’ve had many jobs but working for her and being her mom was my favorite. That is why I must always continue her legacy and make sure others remember her, too.
In memory of our sweet Juliet, we are asking that you consider making a donation to the Juliet Francine Hayes Grant at Staten Island University Hospital to develop educational and training programs for evaluation and diagnosis of children with acute neurologic syndromes.
Thanks to your help, we have already dedicated a room in her memory in SIUH's new Gruppuso Family Women & Newborn Center.