For many women, pregnancy can be a very tough time.
In addition to the physical changes, there is also the constant fear that something could go wrong.
Thankfully in many cases, the worries and fears are exchanged for relief the second that you hold your child for the first time.
Jennie Wilklow never got to experience that opportunity of relief when she welcomed her daughter into the world.
There was no indication there would be anything different with the baby’s health when she was in the womb, but what happened to her skin minutes after she was born changed the course of her childhood.
The cloud of worries began when Jennie was forced to have an emergency C-section in week 34 of her pregnancy. Although the operation and childbirth were successful, it would soon turn out that something was wrong with Jennie’s daughter.
“When they took her out I heard her scream and they said: ‘She is so beautiful.’ These are the words every mother wants to hear, so I smiled and relaxed,” Jennie shared.
But seconds later, the mood completely shifted in the room. The infant’s face had appeared to transform.
Several nurses and doctors seem panicked as they watched what was happening to the brand new baby.
“They did everything to help her, but her skin became rock hard in seconds. After the skin solidified, it began to crack. It caused open wounds throughout her body. Behind the smiles I saw their panicked faces and I asked if everything was OK.”
After the doctor assured Jennie that they had things under control, they gave her more anesthesia, and she was in and out of consciousness over the next several hours, only waking to ask for her husband.
“He just said, ‘It’s bad, […] but I looked into her eyes and she has the most beautiful soul,’” Wilklow said. “At that point, I had no clue how critical she was.”
Their daughter, Anna, was born with a rare condition called harlequin ichthyosis, a genetic disorder that causes babies to be born with very hard, thick skin covering most of their bodies.
The disease is a gene defect that causes the skin to grow about 14 times faster than normal. It creates a redness all over the body, which also affects the eyes, mouth, nose, and ears.
Children born with Harlequin ichthyosis usually die a few days after birth. However, those who survive can expect a normal lifespan. Unfortunately, they are also prone to suffer from complications and delays in development, especially when it comes to motor skills.
Doctors at her local hospital said little Anna was bound to get an infection and they would opt out of treating it to let the newborn pass naturally. But her family got in contact with a specialist on the disorder and sent baby Anna to a different hospital that was more equipped to treat her skin.
“She can’t die, that wasn’t an option,” Wilklow said.
And it turned out, Jennie had given birth to one tough little girl. With the help of doctors and her family, Anna survived.
To treat her skin, the 15-month-old spends about four hours in the bath every day – twice in the morning and twice at night. Once a week, her mom Jennie Wilklow bathes her in bleach to make sure her skin doesn’t catch an infection. When she falls asleep in the bath, Wilklow peels the thick skin off her head and body so it will heal properly in her older years.
During the time Anna spends outside the bath, her mom covers her in Vaseline, Aquaphor and various other lotions to prevent her skin from drying out. Every day, Anna consumes 2,100 calories – the same amount of food as a grown adult – to help fuel her skin for the rapid growth process.
Jennie has created an Instagram account documenting the family’s journey through life.
“I now understand that I got her because of the love I already carry in my heart for my daughter. Anna was meant for me, and I for her, and together we will show the world how beautiful it can be.”