A mother has shared the heartbreaking story of her baby daughter, who was diagnosed with a severe form of epidermolysis bullosa (EB) and died at just three months old. Anne Davis, 43, and her husband Joe, 44, from Savannah, Georgia, were delighted when they learned they were expecting another child, and all pregnancy tests indicated the baby was healthy.
However, when Hallie Grace was born by caesarean section on 5 June 2021, doctors noticed small blisters on her fingernails, umbilical cord and thigh. The neonatologist suspected EB, a rare group of genetic conditions that cause the skin to become fragile and blister easily. Hallie was taken to the neonatal intensive care unit (NICU) immediately.
Anne, a psychologist, said: '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.' The couple later learned that Hallie had junctional epidermolysis bullosa, the most severe form of the disease, which often means children do not survive past their first birthday.
The condition left 80 per cent of Hallie's body covered in blisters. Despite the best efforts of medical staff, who kept her covered in Vaseline and under a heat lamp to avoid friction, Hallie died at three months old. Anne described the diagnosis as 'diabolical' and said: 'Life stopped in that moment and our entire world crashed down around us.'
