SAVANNAH, Ga. (WSAV) — Savannah local Anne Davis was living life to the fullest with her husband Joe and young daughter Brielle.
A psychologist for veterans, her days consisted of helping veterans through traumatic events. Little did she know, she would be helping a different type of warrior, her blue-eyed baby girl named Hallie Grace.
After finding out she was expecting another daughter, Davis said she and her family was excited.
“I’ve always considered myself a girl mom so when that happened I was like ‘oh, this confirms it, I’m going to have two, and they’re going to be just the sweetest together.’ I bought all the cute little matching outfits and bows; we were over the moon, really.” said Davis
Pregnant at 40 years old, Davis had some prenatal genetic testing available to her.
“We were tested for over 300 genetic conditions. I had ultrasounds. By the end, it was once a week. It was very intense anatomy scans, so we made sure there was nothing going on, there was no issue.”
She continued, “Every ultrasound looked perfect. All the tests came back low risk or negative. So we were pretty sure that we were going to have another healthy baby.”
Hallie Grace was born on June 5, 2021 by way of a cesarean delivery. In describing what it was like when she saw Hallie for the first time Davis said, “I put my hand over my mouth and I gasped. The connection I felt with this child was so intense, like I had known her before. She was just everything in the world at that moment. She was perfect, just perfect.”
However, it wasn’t long before a neonatologist noticed blisters on Hallie’s fingers, upper thigh and umbilical cord. He also noticed her long nails that were bent backwards.
Hallie was soon diagnosed with Epidermolysis Bullosa, or EB, which according to the Mayo Clinic, is a group of rare diseases that cause fragile, blistering skin.
A child with EB can have blisters after even the mildest trauma on the skin. However, EB can also affect the mouth, esophagus, lungs, muscles, eyes, nails and teeth. There are four types of EB, all caused by different genetic mutations: EB simplex, Junctional EB, Dystrophic EB, and Kindler syndrome.
Hallie was born with Junctional EB, which is less common and can affect patients more severely as it manifests blistering with little or no trauma.
Hallie’s dad Joe said, “Some of my favorite moments with Hallie include holding her, reading to her and drumming on her checks. Because of EB, holding Hallie was just really difficult to do. I was so afraid of harming her skin and it sometimes it was obvious that holding her hurt her, so I didn’t hold her that often. When I did, it felt so good.”
It wasn’t long before Hallie made a name for herself as “Judgy Baby”.
“From the day she was born, she furrowed her brow like she was judging everybody. We called her Judgy Baby. Brielle would make noises and she furrowed her brows and then she would kind of like brighten because she would realize it was her sister. Her facial expressions were so amazing.” said Davis.
Hallie also enjoyed her big sister Brielle, who made her smile, the song Baby Mine written by Ned Washington and nose nuzzles.
“She would lift her face so we would touch noses, she loved that. It calmed her down, you could just tell that she would seek my face so that she could get that nose nuzzle, so that was kind of our way of having that affection with each other,” said Davis.
According to Stanford Medicine, a rare form of Junctional EB can be fatal in infancy and that was the case for Hallie, who passed away on Sept. 8, 2021, at 3 months and 3 days old.
“By the end, she was missing about 80% of her skin, to the equivalent of 2nd and 3rd degree burns. We’re talking about severe blistering that just was unavoidable. She lost her fingernails, she had blistering in her mouth, down her throat, her diaper area was the worst.” said Davis.
Although Hallie was in quite a lot of pain, she showed strength.
“The thing I think that really stands out to me about her is how tolerant and forgiving she was of us. She never associated us with pain. Joe and I were the only ones who did her wound care, other than nurses and doctors in the hospital.”
Davis continued, “We had to inflict pain on our baby to make sure she didn’t get an infection, which is the hardest thing I’ve ever done in my life, but she always came right back and wanted the nose nuzzles and wanted to coo and tell us she loved us. It never showed that she was angry, or mad, she didn’t seem afraid of us. It’s like she knew that we didn’t want to do it. To me, that was the heart of a warrior. I saw in her this incredible ability to forgive and get through and still smile.”
Hallie’s dad Joe remembers his special moments with her. “She had the best cheeks. I would just tap my fingers on her cheeks and watch them bounce. I found it funny and a few times I got a smile from her too. That was my little weird way to connect with her. I miss her so much.”
Anne and Joe were able to move forward with the help of loved ones like Anne’s parents, who also experienced losing a child, their 3 year old son.
Chris Schmieg, Anne’s mom said talking about their past experience helped Anne and Joe but it was hard for her to watch Anne, go through the experience. Schmieg has advice for parents whose children experience the loss of a child.
“Be there and listen and help them to know that child is still with them and you don’t move past this you move forward. We will not say you move on. That is not a term we will use because you don’t.”
Today, Anne, Joe, family and community members are raising awareness not only through their foundation, Heroes’s For Hallie Grace INC.
The three-part mission of the foundation is to raise awareness, fund important research, and improve the quality of life for individuals and families impacted by Epidermolysis Bullosa (EB) in Hallie’s memory.
Volunteer opportunities include the Hallie Grace Memorial Butterfly Ball for EB. They are in need of volunteers to help contact different companies for sponsorship levels; donations for their silent auction; or raise awareness by spreading the Hallie flies, which have gone as far as Spain, England and South Africa.
For more information on Heroes For Hallie Grace INC. visit Raise Awareness – In Loving Memory of Hallie Grace Davis (hallieflies.com)
For more information on Epidermolysis Bullosa visit Epidermolysis bullosa – Symptoms and causes – Mayo Clinic