At 10 years old, Tamiyah Thomas loves Roblox, shopping, going on trips and spending time with her family. Despite living with a gastrointestinal condition that impacts almost every aspect of her daily life, her mom says Tamiyah’s strength and spirit are inspiring.
Born four weeks early at just 4 pounds 12 ounces, Tamiyah faced a major medical challenge almost immediately. When she was just two weeks old, she was diagnosed with necrotizing enterocolitis. NEC is a serious gastrointestinal condition, often impacting premature babies, which causes the intestinal tissue to become inflamed and damaged and can lead to tissue death. Surgery is often necessary to remove the damaged portions of the intestine, but can result in conditions like short bowel syndrome, like Tamiyah has.
Living with short bowel syndrome
“Short bowel syndrome means Tamiyah’s intestine is unable to absorb enough nutrition and fluids on its own,” explained Dr. Flora Szabo, the gastroenterologist Tamiyah has been seeing since she was a baby. “She depends on a combination of tube feedings and intravenous nutrition to provide what her body needs to grow and stay healthy.”
Managing the condition involves a lot of coordination.
“Her family has to manage feeding schedules, medications, her central line and IV nutrition, as well as frequent medical appointments, lab work and ongoing monitoring,” shared Dr. Szabo. “There is always concern about potential complications, including dehydration, nutritional deficiencies and infections related to her central line.”
But Tamiyah doesn’t let any of that stand in her way.
“What’s particularly remarkable is that despite all of this, Tamiyah attends school and participates in childhood as much as possible,” Dr. Szabo shared. “Our goal is not simply to manage her medical condition, but to help her live as full a childhood as possible—to go to school, learn, have friends and enjoy being a child.”
Tamiyah’s mom, Tionna Elliotte, says she’s in awe of her daughter and how she moves through the world.
“She is such a strong, loving, funny and special little girl,” explained Tionna. “She has been through more than most children her age, but she continues to find ways to smile, laugh and enjoy life. She doesn’t let everything she’s been through define who she is.”
Dr. Szabo agrees whole-heartedly.
“Tamiyah is an incredibly sweet and resilient girl,” said Dr. Szabo. “She has spent countless days and weeks in the hospital over the years, yet she has remained playful and kind. She never complains, even when she is going through things that would be difficult for anyone, let alone a child.”
Caring for a child with complex medical needs
Taking care of Tamiyah is a team effort and Tionna can’t say enough wonderful things about the team at CHoR.
“The care we have received has meant so much to our family,” shared Tionna. “Having a child with complex medical needs can be overwhelming and having people who genuinely care about Tamiyah makes a huge difference. I appreciate the way her care team takes the time to listen, explain things, answer our questions and make sure Tamiyah is comfortable and understood.”
Our team is just as invested in Tamiyah’s care and quickly grew to admire her and her tenacity.
“Over the years, she has met so many members of our medical team,” shared Dr. Szabo. “In the process, she has touched many of our lives. She is incredibly cooperative with everything her care requires and handles the challenges of her condition with a quiet strength and maturity.”
But the care doesn’t end when Tamiyah leaves the hospital.
“Her mother is also extraordinarily involved in her care while working full time,” Dr. Szabo said. “Managing total parenteral nutrition, tube feedings and a central line at home requires tremendous organization, commitment and vigilance. Caring for a child with such complex medical needs truly becomes a family effort, and we have had the privilege of getting to know both Tamiyah and her mother.”
Efforts to reduce dependence on intravenous nutrition
“With short bowel syndrome, the long-term outlook depends on several factors, including how much intestine remains, which portions of the intestine are present, how well the remaining intestine adapts over time, and whether complications develop,” explained Dr. Szabo. “One of the remarkable things about the intestine, particularly in children, is its ability to adapt and over time the remaining intestine can become more efficient at absorbing nutrients.”
If that’s the case, Dr. Szabo’s goal is to maximize the nutrition Tamiyah receives through her gastrointestinal tract and, as the intestine adapts, gradually reduce her dependence on intravenous nutrition. While our GI team hopes that Tamiyah will need them less in the future, they know the impact of their interactions with her have long-lasting effects.
“Although they may not realize it, Tamiyah and her mother are an inspiration to those of us who have had the privilege of caring for them,” shared Dr. Szabo. “Their journey teaches us humility, perseverance and human dignity. We thank them for that.”
No matter what lies ahead, Tamiyah’s mom knows her daughter will continue to inspire others.
“As difficult as her journey has been, I have watched her continue to fight and overcome things that could have easily broken her spirit,” Tionna shared proudly. “I want people to know that Tamiyah is so much more than her medical journey. Yes, she has faced challenges, but she is also a beautiful, funny, loving, amazing little girl with her own personality, dreams and future ahead of her.”