8/22/2014

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Girl's leukemia inspires mom to create tool for babies with cancer

Girl's leukemia inspires mom to create tool for babies with cancer
Gayle Garson created a baby-sized tube top to keep her daughter Robin's central line tucked away while the girl undergoes chemotherapy. Courtesy Gayle Garson.
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SEATTLE -- Having her 9-month-old daughter diagnosed with leukemia was traumatic enough for Gayle Garson. But when doctors explained chemotherapy would require her daughter have a central line with tubes hanging out of her chest for two years, the Seattle mom was overwhelmed.

“Your gut bottoms out, and you’re in shock,” she said. “It did not dawn on me until we were getting ready to take her home what it was going to be like to take care of the Hickman.”

A Hickman is a central venous catheter that allows medical providers to draw blood and administer medicine like chemotherapy without poking a child with a needle or damaging veins. The catheter is surgically connected to the patient’s artery and a pair of tubes hang out of an incision in the chest.

While a Hickman is very helpful during long-term chemotherapy, it can be challenging to maintain in an infant. If not kept clean at all times, the catheter can be a significant infection risk. It can also be pulled out with a gentle tug.

Garson’s daughter Robin had her Hickman implanted shortly after she was diagnosed with acute lymphoblastic leukemia in July 2012. Garson quickly became concerned with keeping it clean and out of her daughter’s hands. The tubes would hang inside Robin’s shirt. They would dig into her skin and could be exposed to bodily fluids or food.

“We didn’t want it near her diaper,” Garson said. “Germs that enter through the caps can cause serious and possibly fatal infections. If she gets an infection in her line, it essentially goes straight to her heart.”

As Robin’s motor skills developed, Garson was worried her daughter would tug on the tubes or pull them out with her knees as she learned to crawl.

Garson searched for something to keep the Hickman clean and tucked away, but the only option nurses gave was mesh netting that did not stay in place. Garson found some offerings online, but they were prohibitively expensive.

Using her sewing background, Garson decided to try to create a solution herself. What she came up with was the Hickman Hider – an infant-sized tube-top with a pocket where the Hickman tubes can be tucked in. It keeps the Hickman clean and away from diapers or the child’s hands.

“It took any temptation to play with them off the menu,” Garson said.

Best of all, Robin loves to wear her Hickman Hider. 

“She is always in one,” Garson said. “She has numerous colors and patterns that she alternates every day. At this point, I don’t know what she would do without one.”

Soon after she started developing the Hickman Hider, Garson began sharing her creation with other infant leukemia patients at Seattle Children’s Hospital. She has since donated them to families across the country and offers a pattern and basic instructions for parents who may want to make their own.

Garson recently started selling Hickman Hiders on Etsy to offset the cost of making and donating them.

“It’s not my intention to create a small business,” Garson said. “I’m still committed to donating as many as possible.”

Robin is now 21 months old and doing well. She has one more year of chemotherapy, but doctors are optimistic she will make a full recovery.

“With the Hickman Hider, we don’t have to be as worried about her hitting developmental milestones,” Garson said. “There’s so much we have to watch out for, it’s nice to keep things as normal as possible.”

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