The new mom and dad were completely surprised when their daughter was born.
A man and his wife were really excited because they were going to have their first baby. The mom-to-be, Jennie Wilklow, had been wanting to be a mom for a long time. She and her husband had prepared for the pregnancy and hoped that everything would go well, so they could have the little girl they were so thrilled about.
Jennie even picked out cute outfits for her future daughter and imagined the day she would hold her baby and dress her up in those adorable outfits she carefully planned. When she finally got pregnant, things were going great. Her check-up didn’t show anything unusual, and the couple was eagerly awaiting the birth of their daughter.
As Jennie was on her way to the operating room, she woke up, reached for her husband, and asked if everything was okay.
“Things were all seemingly perfect. Moments after her skin hit the air it began to harden and then split causing open wounds all over her body,” Wilklow, 34, told of her daughter’s birth in September 2017. For months, the baby’s skin had been thickening, but once exposed to the air, it became dry and rigid, resembling armor.
Jennie Wilklow remembers the astonishment among the hospital staff as her daughter’s eyes swelled shut, and the circulation in the baby’s hands and feet was cut off. The doctors and nurses showed visible signs of distress, and her husband sat silently in the post-op room.
Anna had harlequin ichthyosis, a rare condition where newborns develop thick, splitting, and cracking plates of skin around their body, as explained by the First Skin Foundation.
This skin hardening significantly alters an infant’s appearance and can lead to their lips and eyelids turning inside out. It may also result in constriction around their chest, making it challenging for them to breathe and eat.
In the past, infants born with harlequin ichthyosis usually didn’t survive more than a few days after birth.
However, thanks to medical progress, many individuals with this condition have been able to live into their teenage years or even into their twenties with normal mental and intellectual development. Nonetheless, the First Skin Foundation notes that some newborns with severe harlequin ichthyosis may not survive.
The treatment for this disease is highly intensive and involves a meticulous skincare routine to keep the skin moisturized and soft, preventing infections. Wilklow diligently applies Aquaphor, a healing ointment, to Anna’s skin every few hours.
Wilklow, who hails from Highland, New York, made the decision to leave her job and be a full-time caregiver for Anna to ensure she receives all the care she needs. She expresses contentment with her choice, acknowledging that Anna faces many challenges, but she remains resilient, which inspires her mother to stay positive.
Due to Anna’s excessive skin production, she requires a substantial daily calorie intake of 2,100 calories. Jennie Wilklow explains, “We have to adjust to the heat, the cold, and her skin.” “[We have] her multiple two-hour baths a day and daily caloric needs, and we have weekly occupational therapy and bi-weekly physical therapy.”
“Anna’s personality is always happy and incredibly loving,” Wilklow says of her daughter.
© harlequindiva / Instagram
Now the family is also active on social media, with Wilklow regularly sharing updates on their Instagram and Facebook pages to raise awareness about the disease and document Anna’s journey.
In May 2023, they shared a photo that highlighted Anna’s remarkable growth since her birth. In the caption, the affectionate parents referred to her as their “beauty queen” and openly discussed the support they had received from individuals living with the same condition.
© harlequindiva / Instagram
Jennie Wilklow expresses that she has learned valuable lessons from Anna, including self-trust, self-compassion, and the determination to improve each day.
Wilklow hopes that Anna’s story serves as an inspiration for others, encouraging them to focus on the positive aspects of life even when faced with adversity. She emphasizes that happiness is a choice and is not solely determined by life’s circumstances. Every morning, when she wakes up to see Anna’s radiant smile, she feels a profound sense of gratitude.
© harlequindiva / Instagram
Anna is really, really beautiful! Before you go, take a look at this other article about a little girl who was called a “monster” because of her birthmark. But her mom did something wonderful that brought back her sweet smile.
