Stephanie T.* - Wynne, AR - 2013
Stephanie* Shares Her Story
At 19 years old my mom went to the hospital because she was leaking amniotic fluid. She was told it wasn’t amniotic fluid and that I was just sitting on her bladder so it was normal. She knew something wasn’t right. A day later she went into labor and I was born 4 weeks early on March 19, 1993. Everyone expected a healthy baby. She only had two ultrasounds and they both came back great, showing no complications at all!
As soon as I was born, the doctor called other doctors to the hospital STAT. I was rushed to an incubator before my mom even got to see me. She was wheeled to a nearby room where a nurse entered with a medical encyclopedia and let my mom read the ONE and only paragraph that mentioned anything about harlequin ichthyosis. Luckily, medicine has come along way in twenty years and there’s much more information than there was at that time. After the nurse left, a counselor entered the room to “prepare” my mom for my death since everyone was saying there was no chance of survival for me. My mom was told repeatedly that I wouldn’t make it past a few minutes due to a number of things including: infection, dehydration, and breathing problems since my skin was so tight and it majorly restricted my chest. Simple answer- I wasn’t going to live because babies born with this skin disorder just didn’t live.
My mom just knew I’d be okay. She kept asking the nurse each time she came in, “Is she still alive? How is she?” each time the nurse would reply “Yes, she’s still alive but don’t expect her to be much longer. Babies born with harlequin ichthyosis just don’t make it.” Eventually my mom pointed out to the nurse that I wasn’t expected to live past a few minutes, now its been over night and I’m still alive. My mom never has been one to give up, thank God.
A month after I was born, my mom brought me home-April 27, 1993! She kept me wrapped in bandages because I had deep fissures. She needed to keep a Vaseline-type of lotion on, (Aquaphor®) and it would protect me a little more from infections. She had to change the bandages multiple times a day. Weeks went by and I was steadily progressing and the bandages came off! I looked like a baby instead of a little mummy.
A lot of care went in to taking care of me; eye care, skin care, cleaning out ears, etc. God definitely pairs kids and parents together for a reason; no ordinary woman could deal with the stress or responsibility of taking such great care of a harlequin-affected baby. Especially not at 19 years old! My mom and my grandparents have done a fantastic job.
With the exception of a few hospital trips due to skin infections, I was just like any other child starting kindergarten at 5 years old. I went to a very small public school, (my whole town is small) and made fantastic friends that remained right up until 12th grade! I went out at recess, played in the gym, and was a kick-ball professional… at least I was in my head. I did have to rest a little more than the other kids and I had to stay in the classroom and play inside when it was too hot outside.
From 3rd through 7th grade I was homecoming maid. I was also a cheerleader for four years, in girl scouts, and was even in ballet for a whopping 2 weeks! My dance career didn’t last long because I was a momma’s girl and didn’t want her to leave me there by myself but they wouldn’t let her stay!
In junior high and high school everyone knew me. After all, I was the only red cheerleader on the field (haha!) I never had a problem with bullies. High school drama, yes, but not bullies. Just typical boy drama and drama with friends. No one ever really treated me any different. I had my first boyfriend at 14 years old. We went on a date to a pizza place and a movie. Double dates with your parents at 14 weren’t the coolest thing but now that I look back, I’m glad it happened.
After high school I met the man of my dreams! He had the cutest dimples and big brown eyes. Immediately he shocked me with how sweet he was and how much of a gentleman he was. He even laughed at my corny jokes! We started dating and three months later we were married. When you know God has let you come face-to-face with the man that you were meant to spend the rest of your life with, why wait? We were young, crazy, but completely in love!
Soon after we married, we got a little puppy, an apartment, and moved an hour away from our family to be closer to my husband’s job. It wasn’t easy being away from my family since my mom and I are best friends but we still made a point to see each other whenever we could.
We had everything a young married couple needed; a place of our own, puppy, love, and a flat screen TV. I mean, what else did we need? A BABY! We eventually started discussing kids and whether it was even safe for me to have a baby since I have this skin disorder. Of course, there was no way of knowing since I'm the oldest girl in America with harlequin ichthyosis. No one else has ever been pregnant according to doctors. We talked about it millions of times, prayed about it constantly. We talked to our families, friends, doctors, each other, but mainly to God. We decided we were going to go for it! I've never let my skin hold me back. I've proven statistics wrong my entire life with the help of God, momma, and doctors. I told my husband this and he agreed. If I felt that strongly about it and knew the risks, and were willing to take them, then he'd be behind me every step of the way. After all, he wanted to be a daddy too.
We began to pray every night that God would let whatever he wanted to happen, happen; whether that meant getting pregnant or adopting. Within the first month I had missed my period! I was so nervous because before we tried getting pregnant, we had been irresponsible before and we had a pregnancy scare but then a few days later I started my period. Even though we weren't trying then I still couldn't help but get a little excited. This time, I realized I missed it so after I was a week late, I took a test and told only my momma. It came back POSITIVE. All seven of them did, haha! Curt and I were both overwhelmed with excitement, crying like crazy, kissing, and hugging.
Months later we found out our little angel is going to be a BOY! His name will be William Curtis Drake Turner. I go to a high risk obstetrician because everyone thought I’d have to have special care. I’ve eaten more (I ate a lot before…mainly because I’m a pig!) I apply lotion after my morning bath and most nights I apply Baby Oil Gel. I go to the doctor just as regular as every other pregnant woman. I did lose 2 pounds, and I was instantly worried, but as soon as we went back to the ultrasound room, we discovered my little angel weighed two pounds. He was even a week ahead of what he’s supposed to be, and they moved my due date from May 24th to May 10th. I’m losing and he’s gaining? I’ll take it!
We had a birth plan from visit one: C-section! My doctor figured it’d be much safer and that we could take my little man out at around 30 weeks or a little after so my skin wouldn’t have to stretch any more than needed to have a healthy baby.
Much to my surprise, our last doctor visit I found out that was no longer the plan he had in mind. I’ve been banking on him giving me a little medicine, cutting a little then sewing me up and my baby would be here! That may not be the case. Since I’m doing so perfect and Will’s growing amazingly, he asked if I wanted to do a natural birth. I’d love to because I’m almost positive the healing would be much smoother and I’d rather stay away from infections. The only way we’ll go back to the C-section idea is if he’s a very big baby or if my skin starts acting up.
I thank God everyday that he’s blessed me with so much. A wonderful family, husband, and now he added on a perfect little boy! There’s always something negative you can dwell on in life, let it hold you back, make it an excuse to slack, but you’ve got to be stronger than that “set back” and realize someone always has it worse than you no matter what. God doesn’t give you anything you can’t handle, I believe that with my whole heart!
Jeremiah 29:11 11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
Meet Stephanie's Healthy Baby Boy!
Stephanie T. of Little Rock, Arkansas has the rare, and life threatening skin disorder, harlequin ichthyosis, for which there is presently no cure. But Stephanie has something that is quite possibly…even more rare: a life-loving spirit…for which there is presently no limit! In fact, one look at her mile-wide smile and there is no doubt this sweet mom from Little Rock, knows, despite her skin disorder, she is one lucky lady.
“I haven't let my skin hold me back at all. I'm proud to say I was a cheerleader for four years, in girl scouts, ballet (for a whopping 2 weeks!) and homecoming maid 4 years in a row! I'm very outgoing and I go out often (that was before I got married, now I'm like an old woman!)”, she recently joked on her blog, lifeasusdotcom.blogspot.com.
The blog – born from the perspective of the second oldest person known to FIRST, in the USA to be living with harlequin ichthyosis, whose days are filled with complexities that most of us will never know – is an unexpected burst of positivity and, by all accounts, is the quintessential diary of “the girl next door”. Stephanie is loving life, finding faith and greeting the ups and downs with arms open as wide as the sun.
The words, “Between a life threatening skin disorder, being married and being so young, we have our work cut out for us! Join us throughout our journey” – are splashed across the top of the page, as Stephanie is happy to spread awareness for her disorder and invites the world to peek in at the day-to-day lives of she and husband Curt. And these days, she has something even more to share. Like the rest of the social-media-savvy ichthyosis community, FIRST learned via Facebook, in the early hours of the morning on May 25th that this little lucky lady with the never-ending smile, became the first known woman affected with harlequin ichthyosis to give birth.
Their healthy, beautiful boy, William Curtis Drake, weighed 7 pounds, 10 ounces.
FIRST is delighted to extend a warm and heartfelt congratulation to the entire Turner family on the birth of their beautiful son – affectionately called “Little Will”, by his joyous new parents. We look forward to following their ever-inspirational journey as they continue their work as advocates for ichthyosis and begin their exciting new lives as parents to Little Will.
All the Best!
*Sadly, Stephanie passed away suddenly on March 3, 2017.
Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.