One in 200,000 condition saw baby girl’s skin instantly harden as she was born
Baby Anna, who is now 17 months old, was born on September 17, 2017, at Vassar Brothers Medical Centre in Poughkeepsie, New York. Little did her parents Jennie and James know it, but one of them was a carrier for a faulty gene which caused their baby to be born with harlequin ichthyosis; a condition which means that her skin is unable to retain any moisture.
The little girl was rushed to intensive care soon after her birth, and now she needs four hours’ worth of baths daily, as well as the regular application of lotion to help peel off her excess skin.
Commenting on her little girl's unusual condition in a recent interview, Jennie stated: "I heard the nurse say, ‘She’s beautiful,’ but then after that there was an uncomfortable silence and I suddenly became very worried. I took her in my arms and she was wrapped up in plastic.
"Her whole body had cuts all over it, caused by the extra layers of skin cracking. The poor thing looked so unwell and her eyes were swollen shut ... We weren’t able to touch her, as the risk from infection is very high with harlequin ichthyosis sufferers in the first few days of life, as bacteria can very easily get into the open cuts on the skin.
"We were told just to take it day by day, as the chance of death was very high ... It was all very confusing as no one knew what it was for a while. And I couldn’t understand how something had gone wrong, as throughout my pregnancy everything had gone so well and the ultrasound and stats – or oxygen saturation levels – were all perfect. Seeing her was mindblowing, as she didn’t even look like a baby."
She added: "It was amazing being able to take her home at last, after all that waiting wondering whether or not she would live ... In spite of everything she has been through, Anna is the happiest little baby and very rarely complains about the pain she must sometimes be in. It is a lot of work each day caring for her skin and there will be challenges ahead for us. But her joyful personality makes it all worth it."
Despite her condition, Jennie says that her little girl is happy, and has a playful and upbeat personality. Anna is growing normally, although she does have some mobility issues due to her to her taut skin, which can restrict her movement. Jennie just hopes that her daughter will be able to retain her sunny disposition into adulthood.