The nine months a mother carries her baby are meant to be filled with joy and excitement, not uncertainty. New parents naturally hope for their baby’s safe arrival, eager to welcome a healthy child into their lives. Sadly, that ideal doesn’t always come to pass.
In Highland, New York, Jennie Wilklow eagerly awaited the birth of her daughter, imagining the joy of holding her newborn for the first time. With healthy ultrasounds and routine check-ups, Jennie and her husband felt confident that their baby, Anna, would be born healthy.
However, their world was turned upside down after Anna’s birth. Jennie had a C-section at 34 weeks, and the moment she heard her daughter’s first cry, she felt a wave of relief, believing everything was as it should be. But when Jennie’s husband entered the room, the mood quickly shifted. His stunned silence left her concerned, as he sat motionless, his eyes filled with shock.
Jennie anxiously questioned him, but his response only deepened her confusion. “It’s bad,” he repeated, his words heavy with meaning. Then he added, “Jennie, I looked into her eyes, and she has the most beautiful soul.”
The unexpected diagnosis came shortly after. Anna was born with harlequin ichthyosis, a rare condition that causes thick, diamond-shaped plates of skin, separated by deep cracks. As Anna’s delicate skin hardened within seconds of birth, Jennie was in shock. Just moments earlier, she had thought she was giving birth to a perfectly healthy baby girl. “It’s a moment that stays with you forever,” Jennie said. “It reminds you every day how precious life is.”
Anna’s skin quickly began to split, leading to painful open wounds. Despite the grim prognosis, Anna defied the odds and is now thriving, with her mother describing her as the embodiment of beauty.
Harlequin ichthyosis requires constant care, and unfortunately, no cure exists. Anna’s treatment includes frequent two-hour baths several times a day, along with moisturizing her skin with ointments like Aquaphor. Her care also involves physical and occupational therapy. Due to the condition’s excessive skin production, Anna requires a high-calorie diet of about 2,100 calories per day to maintain her health.
While babies born with harlequin ichthyosis once had a short life expectancy, improvements in neonatal care have significantly increased survival rates. The Foundation for Ichthyosis and Related Skin Types (FIRST) reports that some individuals with the condition have lived into their teens and twenties. However, some newborns with harlequin ichthyosis may not survive. After the thick, diamond-shaped scales shed, the skin turns red and may form thin scales, which can be managed with emollients to prevent cracks and infections.
Despite the challenges, Jennie has remained strong for her daughter, using her Instagram page, @harlequindiva, to raise awareness and share her journey. She posts heartwarming pictures of Anna, showcasing the daily challenges and triumphs of raising a child with this rare condition.
“Anna has captured the hearts of so many people because she is the epitome of perfection in its purest form,” Jennie said. As Anna continues to meet new milestones, Jennie and her family celebrate each achievement with immense pride.
Reflecting on her journey, Jennie now understands that Anna was entrusted to her because of the deep love she already felt for her daughter. “Our destinies are intertwined, and together we will show the world what true beauty really means.”
Thanks to her devoted parents, Anna is thriving. As she approaches her sixth birthday, Anna is flourishing, supported by the care, love, and opportunities her parents provide. Jennie and her husband remain committed to creating an environment where Anna can live a fulfilling life, helping her navigate the world with strength and resilience.
