According to her mom, Jenny, the then-15-month-old baby’s health seemed typical both in the womb and after her birth, yet an extraordinary event involving her skin moments after her arrival set the course for her unique childhood. The baby, Ana, was reportedly born with a rare condition known as harIequin ichthyosis, a genetic disorder that leads to the deveIopment of exceptionaIIy thick and hard skin enveloping a significant part of a baby’s body. Managing her condition requires a rigorous routine for the 15-month-old. Ana spends around four hours immersed in baths each day – twice in the morning and twice at night.
To prevent potential infections, her mother, Jenny, administers weekly bleach baths. During these sessions, she delicately removes the excess skin from Anna’s head and body while she sleeps, fostering proper healing as she grows older. In addition to bathing, Ana’s skin receives constant care outside the water. She is covered in a layer of VaseIine, Aquaphor, and an array of other lotions to prevent dryness. To fuel her rapid growth, Ana consumes a daily intake of 2,100 calories, an amount comparable to that of an adult. Despite the intricacies of her care regimen, Ana is a joyful and spirited child, seamlessly interacting with her two older brothers.
Jenny expressed, “She likes to eat and play and she’s just a very happy baby all the time. I don’t want her to grow up and feel like her whole life is her skin.” The parents had no inkling of their daughter’s condition before her birth, and it was only moments after her delivery that the severity of the situation became apparent. Ana’s skin began hardening and cracking within minutes of exiting the womb, leading to swollen eyes and reversed eyelids. Facing challenges head-on, the family sought the expertise of specialists to guide Anna’s treatment.
The initial hospital suggested that Ana’s infection be left untreated, but the family was unwavering in their determination to ensure Ana’s survival and well-being. A surgical procedure ensured proper circulation in Ana’s extremities, and the newborn was kept in a humidity-controlled environment, covered in VaseIine, for her first month of life. The family’s journey home was marked by both triumphs and hardships. Leaving the humidity-controlled environment caused Ana’s skin to harden and crack once again, but gradual improvements emerged as the months went by. In the eyes of their community, Ana is not defined by her condition. As Jenny rightly emphasized, “She’s more than her disease.”
