Jennie Wilklow from Highland, New York wasn’t expecting her first child and couldn’t wait to meet the bundle of joy she was about to bring into the world.
It was her first time and she was very nervous. When the baby finally came she couldn’t help but notice the scary looks on the doctor’s face and how her husband didn’t say anything either, she knew something was up.
Anna was born at 34 weeks through a C-section.
Jennie told Cafe Mom, “When they took her out, I heard her cry, and they said, ‘She is beautiful.’ Those are the words every mother wants to hear, so I smiled and relaxed.”
They took baby Anna behind the curtain and Jennie became alarmed at that moment and was sending that something was wrong.
Jennie slept off after and the medical staff while looking at the baby didn’t know how to deal with her condition.
According to the First Skin Foundation, Anna was born with harlequin ichthyosis, a rare condition that causes thick plates of skin to form that then split and crack around their body.
Jennie told Cafe Mom, “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.”
When Jennie woke up she asked after her baby, but her husband didn’t answer.
“My husband’s silence scared me; he just sat in shock as the doctor left, and I prodded for more info,” Jennie told 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.’
Many recorded cases of this condition hardly made it through their childhood as they find it hard to eat and breathe, while those with less severe cases made it to their 20s.
Jennie and her husband weren’t ready to give up on their child, even after the doctors insisted that Anna might not make it. They didn’t give up and prayed that their baby comes out better.
“She was beautiful in the purest form,” Jennie said.
“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 told Cafe Mom.
Anna could only be clothed with fleece pajamas.
Jennie has opened up an Instagram page for Anna named harlequindiva.
She posts about her experience with Anna and hopes to bring awareness to people suffering from harlequin ichthyosis.