Daughter diagnosed with 'diabolical' deadly disease after doctors spot blister
A mum has opened up about the heartbreaking story of how she found out her baby daughter had a "diabolical" disease that left 80 per cent of her body covered in blisters.
Anne Davis, 43, and her husband Joe, 44, were over the moon when they found out they would be having another baby. Anne had a great pregnancy even though she was a bit older, and all the tests said the baby was fine.
But when their daughter Hallie Grace was born, doctors saw something was very wrong. "Hallie Grace was the easiest pregnancy," said Anne, a psychologist from Savannah, Georgia. "I enjoyed it, I felt her well and she gave me the perfect baby bump.
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The family pictured during Hallies christening (Jam Press/@tinybutterflywarrior)"She was always kicking around on the scans and her heartbeat was strong. We had no clue anything could possibly be wrong." But when Hallie Grace came into the world on June 5, 2021, by C-section, doctors found small blisters on her fingernails - which were long and bent backwards, umbilical cord, and thigh.
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Not long after, they found out she had epidermolysis bullosa (EB), which is an incredibly rare group of diseases. Some people with EB develop mild cases which aren't fatal, but sadly, Hallie Grace developed a severe form of the illness. Anne shared: "Luckily for us all, the neonatologist at that hospital had seen a case of EB before and suggested it as the diagnosis immediately. That unfortunately meant she was taken to the NICU immediately, so I barely got to kiss her goodbye.
"Once the spinal had worn off, 12 hours later, I asked to see my baby. When they pulled her out, I immediately gasped and had an overwhelming feeling that I have known her soul before. We were just so instantly connected. When I first saw her and got to touch and hold her in the NICU, it felt like everything was finally right in the world. I felt complete. I sang to her, kissed her and snuggled her on my chest for as long as I could keep my eyes open. I think I knew in my heart that I wouldn't get a lifetime of snuggles with her, so I didn't take it for granted."
The mum said 80% of her skin was blistered (Jam Press/@tinybutterflywarrior)
Hallie in bandages (Jam Press/@tinybutterflywarrior)She also said her baby was getting great care in the intensive care unit. She said: "The good thing was that the NICU knew how to handle EB babies, so they made sure not to use anything with adhesives and kept her covered in Vaseline and under a small heat lamp with no blankets on her. They laid her on a very soft blanket underneath to try to avoid any friction, which causes blistering. They let me hold her and breastfeed a little. I sang to her and rocked her as long and often as I could for the next three days."
Hallie was moved to a different NICU in an ambulance where she could be under the care of a dedicated paediatric dermatology team. The doctors still thought she might have a less serious type of EB and did more tests to be sure. Several days later, Hallie got to go home with her mum and dad who were "exhausted" but happy. But this happiness didn't last long. When the new tests came back, Anne and Joe found out their baby girl had Junctional Epidermolysis Bullosa – a most severe form of EB.
Siblings Brielle and Evan can take solace from a pillow with Hallie's face on it (Jam Press/@tinybutterflywarrior)The genetic condition causes the skin to become fragile and blister easily. For most children with the diagnosis, they sadly do not live to see their first birthday. The devastating diagnosis means Hallie Grace died at three months old. Anne shared: "Life stopped in that moment and our entire world crashed down around us. Everyone tried to reassure us it was 'just a skin condition' and that she would be fine, but honestly, I knew in my heart this was extremely bad. We sobbed. We got angry.
"How do you handle finding out that you're going to lose the precious baby you prayed for and spent the past almost year loving and growing? I don't think there's a word in any language in the world to describe what we felt, what we still feel. I felt sick. I immediately grieved for our whole family, including Hallie's big sister, Brielle, who was just a little over two at the time and who already loved Hallie so deeply."
Anne got very little time to spend with Hallie Grace before she passed away (Jam Press/@tinybutterflywarrior)Hallie's EB caused 80 percent of her body to be covered in blisters within weeks. She said: "Her sweet skin blistered and tore with any type of friction or heat. She spent a lot of time naked to avoid diapers. Each diaper change took two people at least 30 minutes to an hour to complete and that was after we got better at it. We had to wrap her up all over and completely change the dressings, which took several hours, every other day.
"We basically were fighting a losing battle. It was incredibly painful for her, but no one truly knew if it was terminal, so we kept fighting. We had her in a clinical trial but she didn't live long enough to start it." Three months and three days after she was born, Hallie Grace Davis had a seizure, leading to heart and respiratory failure and passed away in hospital on September 8, 2021. Her family were left inconsolable but are choosing to share their experience to help others.
The girl's skin was covered in blisters (Jam Press/@tinybutterflywarrior)
Hallie leaving the hospital to go home for the first time (Jam Press/@tinybutterflywarrior)Anne said: "Every second of every day we had her with us here on earth, we fought EB with and for Hallie Grace. And we lost the battle, and our daughter. As she left, we prayed out loud over her and once the doctors told us there was no chance of survival, we let her go and spent hours holding her like we never were able to before. To sum it up, EB is diabolical.
"We believe she won because she is free from pain now, but we lost our most precious gift. In that little time she showed us so much of her beautiful personality. We got to see her incredible smile that lit up the room."
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"She was very observant and had a pure soul. Hallie Grace drew everyone to her, even through a simple photo online." Joe and Anne felt numb following their daughter's passing but leaned on each other, and sought therapy. She said: "Our greatest sadness is the way Hallie left because Brielle never got to say goodbye. She has a huge heart and a high emotional IQ, but she is still only four now and can't grasp the abstract concepts, so she is just so afraid of losing someone else that she loves.
Hallie as a newborn (Jam Press/@tinybutterflywarrior)"Brielle loves to tell people about her sister, we are so very proud of her and she has been such a saving grace for our family!" Despite everything, the family have received a wonderful surprise in the past year – a son, now one year old, named Evan.
Anne said: "We see so much of her in him. We know both of our living children have the most amazing guardian angel now and we continue to include Hallie in every way possible."
The family started a group called Heroes for Hallie Grace Inc to spread the word, raise money for research, and support families affected by EB. Anne said: "Our main compass is to create good in the world in Hallie Grace's name. We want her to be proud of us and we want her to continue to make a positive impact. Ultimately, the goal is a cure. We are forever changed by EB and the purest little girl, who never deserved to live through it."
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