The nine months a mother carries her baby are supposed to be filled with happiness, definitely not a touch of uncertainty. The new parents’ greatest wish is for their precious bundle of joy to enter the world in good health. Unfortunately, this isn’t always the reality.
In Highland, New York, Jennie Wilklow eagerly awaited the arrival of her daughter. She and her husband were absolutely elated at the thought of holding their newborn in their arms. The healthy ultrasounds and regular check-ups had given them peace of mind. Leading them to believe that their beloved Anna would be born healthy.
Little did they know that their lives were about to be forever changed by the diagnosis of an unforeseen rare condition
In September 2017, Jennie underwent a C-section at 34 weeks, bringing Anna into the world. Soon after the birth, the proud mother’s heart was filled with joy as she heard her daughter’s first cries. Confirmation that everything seemed right with her precious treasure.
It was only once Jennie’s husband entered the room that silence fell on the couple, him staring…
Jennie was deeply concerned about her husband’s silent and stunned reaction when the doctor left the room. “The doctors and nurses were visibly shaken, and my husband sat silently in the post-op room,” she added.
Eager for more information, she probed him. “He just kept saying, ‘It’s bad.’ I couldn’t comprehend the full meaning behind those words,” Jennie thought back to that day. “Then he said, ‘Jennie, I looked into her eyes, and she has the most beautiful soul.’”
The shocking diagnosis came. Anna had harlequin ichthyosis, a rare condition characterized by the presence of thick, diamond-shaped plates on the skin, separated by deep cracks. “As the medical team scrambled to provide immediate assistance, her delicate skin hardened within seconds of her birth,” Jennie revealed.
“My reaction was just complete shock because just a few minutes before I thought I was having a perfectly healthy baby girl,” she told INSIDER. “It’s the kind of moment that stays with you forever and reminds you every day just how precious life is.”
“Once it hardened, it started to split, leading to painful open wounds all over her body.” Despite the initial uncertainty surrounding Anna’s survival, she defied all expectations and is now flourishing. “She embodied true beauty,” her mother said, love in her words.
Harlequin Ichthyosis, a rare condition, demands constant care
Regrettably, a cure for harlequin ichthyosis remains elusive, and the treatment is demanding, needing frequent baths and strict moisturization of the skin. To prevent Anna’s skin from cracking, Wilklow diligently ensures she receives two-hour baths multiple times a day.
Additionally, she applies the healing ointment Aquaphor to Anna’s skin every few hours. Anna’s care routine extends beyond skincare, as she also benefits from occupational and physical therapy. Due to the excessive production of skin in individuals with harlequin ichthyosis, Anna requires a higher calorie intake. She must consume around 2,100 calories daily to meet her body’s demands. This special dietary requirement is essential for her overall health and well-being.
In the past, it was noted by People.com that babies with harlequin ichthyosis often had a short life expectancy after birth. However, advancements in neonatal care have significantly improved survival rates. According to the Foundation for Ichthyosis and Related Skin Types (FIRST), “several” individuals with harlequin ichthyosis have reached their teenage and twenties years.
Nevertheless, it is still true that some newborns with the condition may not survive. Following the shedding of the thick scales that are present at birth, the skin of individuals with harlequin ichthyosis becomes red and can be covered in thin scales.
The ongoing symptoms of the condition can be managed through treatment involving the use of emollients. These emollients help keep the skin moisturized, preventing the development of cracks that could potentially lead to infections, as described by the National Organization for Rare Disorders (NORD)
Despite all the difficulties she faced, Jennie stayed strong and pushed back, fighting for her daughter
In an effort to raise awareness about harlequin ichthyosis, Jennie takes to her Instagram page, @harlequindiva, where she shares heartwarming photos of Anna. Through her posts, she sheds light on the daily challenges and provides glimpses into what it’s like to raise a child with this condition.
“Anna has captured the hearts of so many because she represents the epitome of perfection in its purest form,” Jennie said. She finds strength in her daily tasks, knowing that she is doing them for her beloved daughter. With each new milestone Anna achieves, the world joins in the celebration alongside her.
Jennie further looks back, “I now comprehend that Anna was entrusted to me because of the immense love I already carried in my heart for my daughter. Our destinies were intertwined, and together we will exemplify to the world what true beauty truly means.”
With loving parents who will do anything for the baby with a rare condition, Anna is thriving
Anna possesses an inherent beauty that shines through just as she is. She is fortunate to have parents who go above and beyond. Dedicating themselves to ensuring she leads a fulfilling and inclusive life. Her parents spare no effort in providing the care and support necessary for her well-being.
Due to turn 6 in September, Anna is thriving. They work tirelessly to give Anna the best possible opportunities. Striving to create an environment where she can thrive and experience a sense of normalcy. Their unwavering commitment and love are instrumental in shaping Anna’s journey and helping her navigate the world with strength and resilience.