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Consumer/Patient Profiles: Aleah Smith
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Aleah Smith

 

A Teenager’s Journey

 
Aleah with her mom at the 2007 Oley Conference.

Susan Begay

To the casual observer, fifteen-year-old Aleah Smith blends in effortlessly with all the other girls in the halls of her middle school in Indiana. Long blonde hair, big blue eyes, dressed in clothes that fit the age and the times. She’s petite, to be sure, but not so small that she stands out from other girls her age who are on the dainty side.

Appearances can be deceiving, though. In Aleah’s case, they don’t even come close to revealing the truth about the inner workings of her lean, lithe body, which have challenged her from the minute she was born on August 9, 1994.

Short Bowel at Birth

During Tara Smith’s pregnancy with her firstborn child, nothing hinted at anything amiss until a routine ultrasound at twenty-nine weeks gestation showed a bowel obstruction in tiny Aleah. Tara and her husband, Kevin, who were living in Fairfield, California, at the time, wouldn’t know the extent of Aleah’s health issues until she was born, five weeks early. Aleah underwent her first surgery when she was only fourteen hours old. Surgeons removed a cyst from Aleah’s left abdomen and discovered that she had only 25 cm. of small intestine. The diagnosis: short bowel syndrome.

Over the next three weeks, it became evident that Aleah’s stomach was not emptying at all. She vomited everything she was fed. It was then that the enormity of her condition began to sink in, as specialists laid out for the worried parents two stark options: Aleah could be PN-dependent all of her life, or doctors could undertake an extensive (and very risky) surgery to attempt to resect her GI tract. Doctors were unsure if the surgery would be successful and tried to prepare Tara and Kevin for the worst. They had to face the possibility of losing their little daughter only four months after Tara had lost her father to a motorcycle accident.


Defying Odds

Aleah survived the surgery and began a long journey of defying most of the medical odds and predictions that had been laid before her parents. In fifteen years, she has endured fifteen surgeries and so many hospitalizations that her mother can’t remember them all without consulting the thick volumes of medical records and notes she’s meticulously accumulated since 1994.

Today, there are no remaining visual clues to suggest that Aleah was once a very sick child who endured many hardships and much pain before reaching this eighth-grade school year, described by Aleah as her “best ever.” She has been off PN feedings since the year 2000 and had her g-tube removed and stoma closed in 2005.

 

Early School Challenges

Things were much harder in the past. Aleah describes how she moved to her current home in Pittsboro, Indiana, with her parents and younger twin sisters, Sky and Keely, in 2001, just before she started first grade. “I was new at school. Kids stared at me and the backpack I wore [which contained her feeding pump]. My pump would start alarming right in the middle of class. It was very embarrassing.”

The school nurse had spoken to the class that year and explained Aleah’s special health needs to her classmates, which Aleah believes made the situation more tolerable than it might have otherwise been. First graders, by nature, are inquisitive and tend to blurt out their every observation without thinking, but they’re still warmly accepting and nonjudgmental at that age.

Still, trying to fit in with your classmates is hard when you have to visit the school nurse every day to have your feeding pump bag refilled. Aleah couldn’t hang upside down on the monkey bars with the other kids at recess because her pump alarm would blare. Her participation in gym class was often limited, depending on the types of activities the class was doing that day.

All things considered, Aleah says she remembers those early grades as going pretty smoothly, except for the frequent absences when she wasn’t feeling well and had doctor appointments and several hospitalizations.

“At the end of one of my school years, my parents received a nasty letter from the school corporation because I’d missed twenty days of school that year, but Mom and Dad were jumping for joy because I’d only missed twenty days that year!” Aleah smiled. In past years, she’d missed months.

By fourth grade, things became tougher for Aleah. She felt much shorter than her classmates. She became more self-conscious about her medical condition. Her Mic-key button showed through her clothes. Her Bard button leaked and ruined her favorite green-and-white shirt. “Yes, stomach acid ruins clothes,” she says. She grins as she says this now, but back then, she found it mortifying.

The Worst to the Best

Nothing she’d experienced from first through fourth grade, however, prepared her for fifth grade. Her sweet smile fades and she casts her eyes downward when she revisits the year she calls her “worst ever.” Kids began teasing and mocking her. Some girls passed around notebooks with harsh comments written about her and, worse yet, encouraged others to write about her. A boy made up a game called “Aleah’s Germs.”

With the help and support of a handful of good friends and the always-present guidance from her parents, Aleah survived fifth grade and moved on to middle school, where things improved dramatically. She made new friends. She joined the band and participated in the school play. Old bullies moved on and left her alone. She experienced a new sense of freedom in moving from class to class seven periods each day, no longer under the constant scrutiny of any one set group of kids.

When asked about the challenges—both social and physical—that face her, Aleah thinks a bit before she answers and then chooses to talk first about last year’s biggest challenge. “In seventh grade it was Gym class.” The girls had to change their clothes in locker rooms, in front of each other, and Aleah felt their eyes upon her at times, perhaps surveying all the scars she bears from her multiple surgeries. By the end of the school year, though, she came to realize that it was a different kind of staring than in her younger years. She thinks it was mostly out of curiosity and not hurtful or ostracizing. Some even asked her questions, but she preferred not to talk about it too much—not because she’s ashamed or embarrassed, but because it’s just such a long story to tell. Middle school girls have places to go, people to see. Long stories about past medical woes aren’t part of the daily agenda.  Now, as an eighth grader on the cusp of entering high school, her answer is much simpler and one shared by many students her age: “Science class is hardest.”

Gym class has been much easier for Aleah this year than during her seventh grade year.  Because the muscles on the backs of her legs were very tight last year, she had trouble doing leg lifts and stretching exercises in gym class. Sometimes girls ordered, “Aleah, get your leg up higher!” But she stood up for herself and told them she was doing the best she could, something she found very difficult to do when she was younger. Now, when someone asks her why she gets to use the school’s elevator and the others don’t, she smiles and says simply, “Because I’m allowed to.”

The hardest medical aspect of the young teen’s life tends to be the need to eat every one to two hours, which she describes as tiresome and “not as fun as my friends think it would be.” She stands 5 feet 3-1/2 inches tall and weighs 115 pounds, and while she would like to be taller, she concedes that she’s happy with herself as she is.

Looking on the Bright Side

In the past, Aleah experienced almost-continual body aches. Physical competitions were very hard for her. When she missed school, it was difficult to make up the work. She sometimes had to leave events early, such as her best friend’s sleepover, because she was tired or achy. She missed her first middle school dance entirely. Things that helped her feel better were heating pads, hot baths, and lots of sleep.  Aleah has learned over the years to listen carefully to what her body is telling her. Her advice to other kids: “When you’re tired. . .sleep!”

Everything changed for the better after November 5, 2007, when Aleah had surgery at Riley Children’s Hospital in Indianapolis to remove a bronchogenic cyst from her diaphragm behind the left lung and heart. The surgery dramatically improved her health and well-being, leaving her feeling “fantastically awesome,” she crows. “I wake up in the morning feeling 100% these days.”

Aleah felt so much better post-surgery that she was able to join the Tri-West High School Marching Blue Alliance early - as an eighth grader - at the invitation of the Band director, something she would have found very difficult to do as a seventh grader because of the physically demanding nature of marching band.  A flutist, Aleah began rigorous practice sessions in May of 2008.  When competition season began in July, practices took place every day and lasted for two and sometimes three hours.  Competitions were usually held on Saturday mornings and the bus sometimes left as early as 5 am for the all-day events.  Marching band season lasted four months and the heavy schedule was “definitely tiring” for Aleah, she shares, but she also happily describes it as “totally awesome. Everyone in marching band is one giant family.”Aleah is also a member of the Tri-West Middle School Drumline Color Guard.

Strength Through Sharing

The Smiths credit the Oley Foundation with serving as a life preserver for them all these years. Tara began serving as a Regional Coordinator four years ago. Aleah shares that the great thing about attending the yearly conferences is that everyone there “understands.” No explanations needed. If an ostomy bag leaks at an Oley conference, no one gives it a second glance.

She wishes that there had been some method of daily communication available between Oley kids when she was younger. She’s quick to credit her friends with filling that void, though, and says she’s come to the realization that everyone has his or her own cross to bear. One good friend was diagnosed with juvenile diabetes. Another has a younger sister who has seizures.

Aleah remembers how she used to ask, “Why me?” when she was younger. Not anymore. She believes her health issues have made her kinder and more compassionate to others. She feels fortunate that she is no longer PN-dependent or on g-tube feedings. She beat the odds and defied the grim predictions made after her birth, a happy outcome she attributes to “a little luck, a lot of prayers, and my great parents.”

When asked the hypothetical question, “Would you undo all this if you could?” she pauses a long time and finally answers with a half smile, “I don’t know. I’ve lived with it so long. It’s just who I am.”

—Susan Begay is a freelance writer and a friend of the Smith family.

more Calendar

9/26/2016 » 9/30/2016
Malnutrition Awareness Week

5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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