A mum has shared the heartbreaking story of how her daughter was diagnosed with an extremely rare disease that saw 80% of her body covered in blisters.
When Anne Davis, 43, and husband Joe, 44, found out they were expecting their second child, the couple were overjoyed.
It was a smooth pregnancy but due to being of advanced maternal age, the mum was given extra genetic tests – but everything came back normal.
It wasn’t until the pair’s daughter, Hallie Grace, was born that doctors realised something was very wrong.
“Hallie Grace was the easiest pregnancy,” Anne, a psychologist from Savannah, Georgia, told NeedToKnow.
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“I enjoyed it, I felt her well and she gave me the perfect baby bump.
“She was always kicking around on the scans and her heartbeat was strong.
“We had no clue anything could possibly be wrong.”
Hallie Grace was born on 5 June 2021 through C-section, when doctors noticed a few small blisters on her fingernails – which were also very long and bent backward – umbilical cord and left thigh.
Soon after, she was diagnosed with epidermolysis bullosa (EB), a group of rare diseases.
While mild cases aren’t fatal, unfortunately, this was not the case for poor Hallie Grace – as she soon developed a more severe form of the illness.
Anne said: “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 had 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.”
Her baby was also being well taken care of 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 later transferred by ambulance to another NICU as the other hospital had a dedicated paediatric dermatology team.
At this time, doctors still believed she had a milder version of EB but ordered further tests to be sure.
A few days later, the newborn was allowed to go home with her parents, who were “exhausted” but happy – but this joy was not to last.
As the new tests came back, Anne and Joe’s worst fears were confirmed as they were told their daughter had Junctional Epidermolysis Bullosa – a most severe form of EB.
It is a genetic condition that causes the skin to be fragile and blister easily.
Most children with this diagnosis do not survive past their first year.
Tragically, this was also the case for Hallie Grace, who passed away at three months old.
Anne said: “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.”
Hallie’s presentation of EB saw 80% of her body 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 8 September 2021.
Her family was left inconsolable but are choosing to share their experience to help others.
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.
“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 abstract concepts, so she is just so afraid of losing someone else that she loves.
“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 has received a wonderful surprise in the past year – a son, now one-year-old, named Evan.
She 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 has set up an organisation called Heroes for Hallie Grace Inc, in a bid to raise awareness, fund research, and help families impacted by EB.
Anne added: “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.”
