Mother Shares Journey of Son Born with Rare Skin Condition

Leeanna Bentley, a mother from Sheffield, recently opened up about the extraordinary challenges she faced after giving birth to her son, Caiden, who was diagnosed with a rare skin condition known as congenital ichthyosis. The condition manifests in a variety of ways, but for Caiden, it meant being born with a thick, yellow membrane covering his skin, which doctors described as a collodion membrane.

During her pregnancy, Leeanna felt a persistent sense of unease. Despite reassurances from medical professionals that her unborn child was healthy, she noticed that Caiden was less active compared to her previous pregnancies. “I have older children, so I knew what to expect in pregnancy. He wasn’t moving much at all,” she explained. Leeanna sought medical advice multiple times, but all tests indicated that Caiden was fine.

Leeanna went into labor five weeks early, at just 32 weeks, in June 2019. The moment Caiden was born, the delivery room fell silent, engulfed in an atmosphere of disbelief. “He looked like a little Oompa Loompa when he was born, because he was yellow,” she recalled. The newborn was quickly whisked away to special care, leaving Leeanna overwhelmed with worry.

Understanding Congenital Ichthyosis

Caiden was diagnosed with congenital ichthyosis, a genetic disorder affecting the way skin grows and sheds. The condition can result in extremely dry, scaly skin, which can lead to a host of complications, including infections and difficulties with temperature regulation. According to medical sources, Caiden’s specific type of ichthyosis affects only one in 300,000 people worldwide, making his case particularly unique.

When Caiden was born, he was immediately placed in a humidified incubator to assist the shedding of the membrane. This treatment was crucial, as the condition makes the skin prone to inflammation and other complications. “He was extremely fragile when he was born,” Leeanna noted. “His skin was bright red, like a little tomato, and when it peeled off, he would cry in pain.”

As he grew, Caiden faced numerous challenges, including frequent skin infections and a heightened vulnerability to illness. Leeanna described a rigorous skincare routine that involved applying cream every two hours and giving him long baths to alleviate his discomfort. “I barely slept,” she said, recalling the demands of caring for Caiden with little support.

The Emotional and Physical Toll

Caring for a child with congenital ichthyosis has not only been a physical challenge but also an emotional one. Leeanna expressed the difficulty of watching Caiden suffer, particularly when he contracted meningitis at four months old. “We were told he might die but incredibly, he made it through. He is a little warrior,” she said, reflecting on the emotional toll of that experience.

At six years old, Caiden continues to face daily hurdles. His skin grows and sheds at an accelerated rate, causing pain and discomfort. He has developed issues with sight and hearing as a result of the condition, and at times he struggles with feelings of isolation due to his differences from other children. “It’s hard for him watching his siblings run around the garden, but he is remarkably upbeat,” Leeanna shared.

Despite the challenges, Leeanna takes pride in Caiden’s resilience. “He is so positive and makes me very proud,” she said. To help alleviate some of his pain, Leeanna is currently fundraising for a nano bubble machine, which is designed to assist in the shedding of skin more comfortably.

Leeanna and her partner, Lee, were also faced with the prospect of having more children when they unexpectedly became pregnant with twins. The couple was warned that the twins might inherit congenital ichthyosis, but they celebrated when both Samuel and Everlin were born healthy in April 2021.

Now, Leeanna actively shares their journey to raise awareness about congenital ichthyosis and to support families who might be facing similar challenges. Her story highlights the profound resilience of both mother and son as they navigate the complexities of this rare skin condition.