Her Baby Was Born With No Skin on Her Hands and Feet
Danni, a young mother, gave birth to her baby Isla on July 20, 2014. After normal-looking ultrasounds, Danni could not wait to meet her newborn daughter. Only while the nurses were preparing to weigh Isla did they realize something was horribly amiss. After placing the eight-pound Isla on the scale, they noticed the newborn girl had no skin on her feet and hands.
The doctors said little Isla had an infection, an issue medication would resolve. Although the doctors quickly administered antibiotics, Isla’s condition worsened two days later. Danni woke up to the sounds of concerned doctors milling about Isla in her crib. Isla’s condition got to the point where her entire body was covered in mysterious marks resembling burn marks.
Danni could not get any answers to her daughter’s horrible skin condition since the doctors were baffled. One of the doctors thought the red marks and scabs were due to a bad reaction to one of the administered medications. However, none of the hospital’s staff had ever seen anything even remotely similar to this condition. No medicine or cream seemed to work, and the worse this condition got, the more concerned Danni grew. Fearing that the condition might be fatal, Danni braced for the possibility that her daughter wouldn’t survive.
Danni hid the frustration, heartache, and pain they were all experiencing for two whole years after Isla was diagnosed with Epidermolysis bullosa. All the while, Danni, and Isla were victims of verbal attacks. Strangers often made nasty comments about Isla’s skin, accusing Danni of being a neglectful mother. None of them had any idea what these two were going through.
Danni kept their nightmarish battle with Isla’s condition to herself. Despite the struggles they faced together while navigating EB, Danni and her daughter have formed an unbreakable bond. Danni injects her young daughter’s blisters every day to drain the fluid, after which she bandages and covers Isla’s body with creams. Isla’s EB gets so bad some days that her skin peels off. She is usually motionless when it gets that bad. Regardless, little Isla is a fighter who has since learned to press on, enjoying as many normal and playful activities as possible.
Danni had been informed that apart from lacking the ability to walk or talk, Isla would not live beyond six weeks. In addition to being two years old, Isla can sing and run. She has bettered everything they said she was incapable of doing.
Epidermolysis bullosa (EB) is usually inherited. Scientists have identified over a dozen genes involved with the formation of the skin that, if defective, can cause EB. This rare condition affects one out of every 20,000 newborns in the United States alone.
Unfortunately, no treatment or cure exists. The condition’s most prominent symptom is extremely fragile skin that apart from blistering, tears as a result of minor friction or trauma. Although severe cases of Epidermolysis bullosa can be fatal, Isla’s was lucky to suffer from a relatively mild case.
Although prevention is impossible, you can help to prevent blisters and associated infections.
• Handle your children gently and support them behind the neck under the buttocks to pick them up. Do not lift them from under their arms. Remember to place your baby on a soft material like cotton
• Moderating the temperature in your home to ensure it remains cool and steady is useful
• Take extra special care of the diaper area
• Prevent the children from scratching by trimming their fingernails
• Dress your babies in soft materials and clothes that are easy to get on and off
• Avoid rough materials and hard surfaces
• Keep your children’s skin moist by gently applying lubricants like petroleum jelly
• Providing nutritious diet to promote growth and development, which helps the healing process
Although a lot of people are suffering from EB, many individuals and doctors remain clueless about this condition. As such, raising awareness about Epidermolysis bullosa is important. By going public with her story, Danni is hoping to raise the awareness of EB. Using vitamins and other supplements including iron and calcium to help prevent additional complications is important for those suffering from EB.