This young Arkansas woman was born with a rare skin condition that has threatened her life since the day she was born. Against the odds, however, she survived. And despite her condition, she was determined to live as normal a life as possible. So, naturally, 20 years later, she got pregnant. But then doctors seriously feared for both her and her unborn child. What actually happened, though, can only be described as a miracle.
Stephanie Turner from Wynne, Arkansas, was born with an almost unique, and deadly, skin condition: Harlequin ichthyosis. In fact, in the decade in which she was born – the 1990s – very few such babies lived beyond a few weeks old. Yet somehow, Turner managed to defy those statistics and live a happy life.
What is Harlequin ichthyosis? Well, those with the condition develop thick, plated skin. Sufferers are also especially prone to infection due to deep cracks between those plates. Moreover, facial disfigurement can occur owing to the skin’s thickness, and respiratory failure may be caused by a constricted chest wall unable to take in enough air.
The condition can often prove fatal, particularly in infants, because of the high infection risk. In fact, the condition was once almost always deadly, but life expectancy has recently increased owing to improved treatments. Turner is one such person to have beaten the odds, and she uses a crucial cream that helps lubricate her skin and keep bacteria at bay.
“I’ve actually had someone come up to me and ask if I was in a fire,” Turner told the Daily Mail. Yes, her skin stretches and splits badly due to the growth rate of her skin being seven times quicker than average. She also has hardly any hair and has receding eyelids and ears.
Donna, her mom, said, “They told me babies who are born with this skin condition had no hope.” And yet defying doctors is not the only impressive thing about Turner. Indeed, she has an incredibly positive outlook on life, despite the continual pain the condition causes her.
“The skin is the only thing I’ve ever known,” she told the Daily Mail. “So I don’t know how to look at myself any different.” With Turner determined to live her life as normally as possible, then, it’s this defiance and positivity that first attracted her partner Curt.
“When I met her I didn’t see a person with a skin disorder, I just saw a beautiful woman,” Curt told the Daily Mail. “She was funny and she’s always trying to make things positive.” So after a brief period of dating, the couple married a few months later.
Then, of course, comes what often follows weddings – starting a family. “I always wanted to be a mom,” Turner told the Daily Mail. “But I didn’t know if I could have kids.” Consequently, she became not only the second oldest American survivor of Harlequin ichthyosis, but the first with the condition to become pregnant.
This being the first case of its kind, medics had little idea what would come of this unprecedented medical situation. “The doctors couldn’t tell us anything, because I was the first one [with Harlequin ichthyosis] to consider having a baby,” Turner told the Daily Mail. What was certain, though, was that doctors feared for her life.
Indeed, medical professionals hadn’t been able to predict how her skin would react to her belly expanding as her baby grew inside of her. But, ultimately, the pregnancy actually proved beneficial to her condition. In fact, it was only when it came time to deliver her first child that the real problems began.
“I didn’t have any problems at all up until it was time to deliver him, and then I ran into some issues,” understated Turner. Doctors had originally wanted as natural a birth as possible due to its unique nature. But, as the birth was a week late already, it proved impossible.
“Since I’m the first person to ever do it, they wanted me to do it as natural as possible,” Turner told WMC Action News 5. “That just wasn’t happening.” However, the medical team’s decision to induce would bring about yet more complications.
“[Labor] was fine one day. Then two days rolled around, then we hit the third day,” said Curt, who was by his wife’s side every step of the way. “She really started to have bad labor pains and they put an epidural on her. [That] was only working on one side. She was hurting.”
On day four, doctors attempted a C-section, which presented a whole new set of problems. “[Doctors] couldn’t get a piece of machinery to work because of her skin,” said Curt. “They told us that the epidural wasn’t working, and they were going to have to put her under.”
Distressingly, no one else could be present while doctors performed the operation to deliver the baby. And yet, two agonizing hours later, Turner delivered William Kurtis Drake Turner, a seven-pound 14-ounce baby boy. And what’s more, the newborn didn’t have the skin defect.
Harlequin ichthyosis develops due to an abnormality in the ABCA12 gene. However, if the gene from only one parent has the mutation, symptoms may never appear. In order for the condition to transpose, then, the abnormality needs to be present in both parents’ ABCA12 genes.
“I can’t tell you what good of a feeling it is just to have your children healthy and happy,” Turner told the Daily Mail. She did, however, think that having more babies would be too much of a risk. Therefore, if the couple were to have more, she said, they would adopt. But that was in 2013.
In early 2015, then, Turner gave birth to Olivia, a healthy baby girl. Forever with a positive outlook, she said, “I hope the future holds nothing but happiness. I’m sure there will be a few bumps in the road, but that’s life. We’re just focusing on my two perfect babies.”
From her cheerful optimism, Turner hopes her kids will learn “to pick your battles in life. Not everything has to be a big deal or a heart wrenching obstacle. Sometimes it helps to laugh about it and go on. Who said being a red gal couldn’t be fun?”