Minor bumps and bruises are part of growing up for most youngsters. That's what Rebekah and David Bell of Sigourney, Iowa, thought when they first noticed the discoloration on daughter Taytum's left leg in March 2009. They figured she had fallen or hurt herself while playing.
But as Taytum's bruise became larger and deeper over the coming days, Rebekah and David grew concerned. They visited their pediatrician, who referred Taytum to University of Iowa Stead Family Children’s Hospital, where pediatric rheumatologists confirmed the diagnosis: linear scleroderma, an autoimmune disorder that causes a hardening of the skin that can seriously affect the development of the bones, muscles, and tissue underneath.
"This was all so new to us. We had never heard of scleroderma," Rebekah says. "It was pretty rare for this to affect someone so young and to progress so rapidly, as was Taytum's case."
Treatment began right away. Taytum received intravenous infusions of medication at Ul Children's Hospital each month, plus weekly injections and daily oral medications at home. It's not an easy regimen for a child, and David credits the medical team for their gentle, caring manner that helped put Taytum at ease.
"She really struggled at first," he recalls. "It took a couple hours to get that first IV started, but the nurses were very patient. They never got upset with her. Each visit got easier, and eventually Taytum was even showing them where to insert the needle. That was pretty amazing."
Taytum's condition improved, and after several months the scleroderma was in remission. But the treatment had weakened her immune system, and by late fall 2009, Taytum developed a bacterial infection that caused her lymph nodes to become severely inflamed.
She spent nearly a week at Ul Children's Hospital in December 2009, receiving antibiotics to treat the infection. Later that month, pediatric otolaryngologists successfully performed surgery to remove a lymph node behind Taytum's ear and to drain another. After several more months of antibiotics, Taytum's infection was gone.
Taytum continues to take medication to treat the scleroderma, but any physical symptoms have disappeared. The condition could reoccur, so Rebekah and David regularly check Taytum for any signs of a flare-up and bring her to Ul Children's Hospital for follow-up care. Taytum, however, is back doing the things she loves ― riding her bike, making sidewalk chalk drawings, and playing with brothers Trace and Xander.
"Taytum has had a very tough year," Rebekah acknowledges. "The IVs, the shots, the steroids... but throughout all of this, she has kept a smile on her face. She's the bravest kid I know."
The Bells feel strongly about the care Taytum received at UI Stead Family Children’s Hospital. "There really aren't words to express the gratitude we feel toward the doctors and nurses, and just the entire staff," Rebekah says.
"They made her feel, and us feel, like she was the only kid they were treating," adds David.