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 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
Treatment began right away. Taytum
received intravenous infusions of medication
at UI 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
"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
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 UI 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.
Now 3 years old, 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 UI Children's Hospital
for follow-up care. Taytum, meanwhile,
is back doing the things she loves—riding her
bike, making sidewalk chalk drawings, and
playing with brothers Trace, 7, and Xander, 4.
"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 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.