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Neonatal intensive care specialist links parents to experts

CHARLESTON, W.Va. - Parents are rarely prepared when their newborn baby gets transferred to the intensive care unit.

Though some know their child could have medical issues, many are taken completely unawares when their baby has a severe birth defect or is born weeks early. Suddenly, the new mom and dad are thrust into a world of confusing medical terminology, sterile hospital rooms and seemingly endless hours of waiting.

That's where Edith Hayes comes in.

While nurses and doctors are primarily focused on the health of their patients, the babies, Hayes' No. 1 priority is the children's parents.

Hayes is a neonatal intensive care unit family support specialist for the March of Dimes. Though she is paid by the organization, she spends most of her days working at the NICU in Charleston Area Medical Center's Women and Children's Hospital.

She does not provide any medical advice, and she's not a counselor. Hayes' job is to bridge the gap between parents and hospital staff.

"Sometimes nurses and medical staff are intimidating to families, not meaning to be," she said.

It's like a grown-up version of "white coat syndrome," Hayes said.

"They don't want to ask dumb questions."

When parents are confused about their child's progress, an upcoming medical procedure or any other NICU-related event, Hayes goes to the nurses and doctors and asks them to visit the family to better explain what is going on.

"It is kind of a foreign language," she said.

She also connects parents with any services they might need. If a mom wants to breastfeed, Hayes directs her to one of the hospital's lactation consultants. If parents need temporary housing while their child is in the hospital, she connects them with the Ronald McDonald House.

She said many parents do not know NICU families can park free at Women and Children's, so she helps them get a parking pass.

Hayes said her smallest gestures are sometimes the most important to patients. Soon after she became a parent liaison in March, she started stocking snacks in the NICU parent lounge. She said more than one parent has thanked her for the food. They arrived at the hospital late at night and in their panic did not have any pocket change to feed the vending machines.

Hayes also organizes a monthly family support dinner for NICU parents in the unit's conference room. She said the dinners give families a chance to relax and share their experiences with other NICU parents.

Other times, Hayes just listens.

"I think they look forward to me coming in so they can share the milestone their baby reached. Sometimes the parents need to tell their story, and the staff has a limited amount of time to get everything done," she said.

In addition to their services for parents, Hayes and the March of Dimes provide professional development for nurses to teach them how to work with NICU families and their special-needs infants, how to help those parents make the transition from hospital to home and how to help them grieve if their child passes away.

Hayes hopes to expand her services at the hospital. She recently attended a conference in Chicago where she met other March of Dimes NICU liaisons, and picked up several ideas.

She wants to start a scrapbooking class for NICU parents to help them track their infant's progress.

She also is working on a photo book of NICU staff, so parents can put faces with names, as well as photo brochures of the Ronald McDonald house, to give parents an idea of where they will be staying while their child is in the hospital.

"It's a rollercoaster ride for a lot of them," Hayes said.

Contact writer Zack Harold at 304-348-7939 or zack.harold@daily Follow him at www.twitter. com/ZackHarold.



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