Those nine months a mom carries her baby are filled with joy, anticipation, and a dose of uncertainty. What the new parents hope for is their bundle of joy to be healthy. Sadly, that is not always the case.
Jennie Wilklow, from Highland, New York, couldn’t wait to meet her daughter. She and her husband were over the moon to hold her in their arms. All the ultrasounds and doctor’s appointment suggested the baby was healthy, so they were eased and never thought sweet Anna would be born with a condition that would change all of their lives forever.
Jennie delivered Anna via C-section at 34 weeks. Doctors told her she looked beautiful and that was all Jennie needed to hear at that point.
Shortly after, the proud mom heard her daughter cry, and that was just another sign that everything was right with her little jewel.
When her husband visited Jennie, he was strangely silent and looked worried and puzzled.
“My husband’s silence scared me; he just sat in shock as the doctor left, and I prodded for more info,” Jennie shared with Cafe Mom.
“He just kept saying, ‘It’s bad.’ What does that even mean? I thought in my head. He told me, ‘Jennie, I looked in her eyes, and she has the most beautiful soul.’”
Anna was diagnosed with harlequin ichthyosis, a rare condition that causes thick diamond-shaped plates that are separated by deep cracks. “As they tried frantically to help her, her skin hardened within seconds (of birth). After hardening, it began to split, causing open wounds all over her body,” Jennie told Cafe Mom.
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Although doctors weren’t sure she would survive, Anna beat the odds and is thriving. “She was beauty in the purest form,” her mom said.
There isn’t cure, and the treatment is quite demanding as it requires constant baths and keeping the skin as much moisturized as possible. “Every couple of hours I covered her with Vaseline and bathed her for many hours of the day. I had dreamed for years about the things my baby would wear, and though it seemed so trivial, it was what I struggled with most,” Jennie said.
In an attempt to raise awareness about this condition, Jennie posts photos of Anna on her Instagram page harlequindiva. She opens up about the everyday struggles and what it is like to have a child with harlequin ichthyosis.
“Anna captured everyone’s hearts because she is the purest form of perfection. Doing the work every day is simple when I’m doing it for her, and with every new accomplishment, the world celebrates with me,” Jennie told Cafe Mom.
She adds, “I now understand that I was given her because of the love I already carried in my heart for my daughter. Anna was meant for me, and I for her, and together we will show the world what true beauty is.”
’’We Got Stares’’, Parents Choose to Remove Baby Girl’s Rare Birthmark to Avoid Rude Reactions
A happy mom recently told the story of how her little girl said goodbye to a birthmark on her forehead, even though they initially faced some criticism from doctors.
A very uncommon birthmark.
© viennarosebrookshaw / Instagram, © viennarosebrookshaw / Instagram, © viennarosebrookshaw / Instagram
Here’s the story of Celine Casey and her two-year-old daughter, Vienna Shaw. Vienna was born with a rare birthmark called congenital melanocytic nevus (CMN) on her forehead, which only occurs in one out of every 20,000 newborns.
When Celine learned about the birthmark, she felt worried and wondered if she had done something wrong during her pregnancy. She didn’t know what the birthmark would mean for Vienna but was determined to remove it so that her daughter could grow up without feeling different.
© viennarosebrookshaw / Instagram
Even though the birthmark didn’t affect Brookshaw’s physical health, Casey knew it could impact her daughter’s mental well-being as she grew older and interacted with other children who might be curious about her condition.
Celine shared that the family sometimes used to hide Vienna’s birthmark by covering her face when they went out. She said, “We went out daily with her and got a few stares.”
The surgery was challenging.
© viennarosebrookshaw / Instagram
When they sought help from the NHS, the family received disheartening feedback. Doctors couldn’t go ahead with the surgery to remove the birthmark, categorizing it as a cosmetic procedure.
However, the parents viewed it differently. They were genuinely worried about potential teasing from other kids, which could affect their daughter’s mental well-being at a young age. Casey was also concerned that if they didn’t remove the birthmark, her daughter might grow to resent her and her partner.
© viennarosebrookshaw / Instagram, © viennarosebrookshaw / Instagram, © viennarosebrookshaw / Instagram
The parents took matters into their own hands and privately raised the required funds. Through crowdfunding, they managed to gather $52,000 within 24 hours. However, due to increased hospital costs in 2020, they had to raise an additional $27,000. With a new funding request, they eventually reached their goal.
They encountered difficulties with doctors.
© viennarosebrookshaw / Instagram
Disagreements between the medical team and the parents have led to differing opinions. Vienna’s parents wanted the birthmark removed through surgery, but the surgeon refused to perform the procedure. The surgeon’s stance is rooted in the belief that the child should make the decision once she reaches an appropriate age.
After this controversy arose, Daniel Brookshaw, Vienna’s father, expressed his dissatisfaction with the doctor’s viewpoint. The doctor also consulted with a dermatologist who concurred with the surgeon, emphasizing that the birthmark doesn’t threaten Vienna’s health and is not cancerous.
The surgery was completed successfully.
© viennarosebrookshaw / Instagram
Vienna is now two years old, and her doctors have successfully removed her birthmark, leaving only a faint scar between her eyebrows. Casey regularly shares updates on Shaw’s scar and recovery process on her social media, and followers often comment on how beautiful her little girl looks.
Despite the birthmark being gone, Casey mentioned that they still have to travel between cities to check the healing of the scar and see if any additional procedures are needed beyond the three she has already undergone. Shaw is now enjoying the typical life of a two-year-old.
© viennarosebrookshaw / Instagram
This little girl’s case with her birthmark brings attention to the delicate balance between parental advocacy and a child’s autonomy in medical decisions. While her parents aimed to secure her social acceptance and well-being, medical professionals stressed the importance of respecting Vienna’s future autonomy over her own body.
This story serves as a reminder of the intricate ethical considerations that arise when navigating the boundaries of parental authority and individual autonomy, prompting broader reflections on the rights of minors in the medical realm.
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