It’s only natural to feel nervous when you’re pregnant, especially if you’re expecting your first child.

If all goes well with the pregnancy and baby is in the right place you can look forward to meeting your healthy bundle of joy.

Jennie Wilklow, from Highland, New York, was looking forward to meeting her baby daughter. She’d had a healthy pregnancy and all tests showed she was having a healthy baby.

But when her daughter was delivered Jennie will never forget the shock of the hospital staff and the “scary” silence of her husband.

When Anna was born via emergency C-section at 34 weeks the delivery staff told Jennie she was beautiful.

“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,” Jennie told Cafe Mom.

As they took baby Anna behind a curtain to make sure everything was okay, Jennie sensed that something was wrong.

‘Open wounds all over her body’

Jennie was given more medicine to calm her and the next thing she knew she was out.

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, according to the First Skin Foundation. Staff at the hospital weren’t sure what they were dealing with at first.

“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.

‘It’s bad’

When Jennie woke up her husband was there but didn’t answer when she asked if Anna was okay.

“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.’”

The way an infant’s skin hardens in those that have this condition can cause their lips and eyelids to turn inside out or create a tightening around the chest that makes it difficult to breathe and eat.

Previously, those born with this condition would only survive a few days after birth but today many with this condition have survived into their 20s, as long as the condition isn’t severe.

Anna defied all odds

Doctors had told Jennie that Anna probably wouldn’t survive but against all the odds and having two loving and devoted parents who were determined their baby wouldn’t die, Anna survived.

“She was beauty in the purest form,” Jennie said.

But treating this kind of skin condition is not easy and to begin with Anna could only wear fleece pajamas.

“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.

Jennie shows off her beautiful daughter on an Instagram page called harlequindiva.

It’s an account where Jennie is completely honest about the ups and downs of having a child with this condition to help raise awareness and to show how beautiful her Anna is.

“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.”

Anna and her parents are truly beautiful souls and their unconditional love for each other shines through.

Please share this story to celebrate our differences and to send love and happiness to this family and their beautiful daughter!