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Need Medical Information? Turn to Family Resource Center

Posted on Aug 09, 2017

Mary-Kate Haver, a medical librarian, left, helps parents gather information on a child's diagnosis, care and expected outcomes.

When Olive was born close to their home in Brooksville, her parents Katie and Bill had no reason to expect anything other than a perfectly healthy child. But Olive had a stroke shortly after birth and was rushed to Johns Hopkins All Children’s Hospital for expert care. The team of specialists first sought the cause of the stroke. “Doctors play detective, and we have had an entire team of neurologists, endocrinologists, cardiologists and hematologists to find out what was going on with Olive,” Katie recalls.

 

Hours of Operation

Family Resource Center 

The Family Resources Center is open from 9 a.m. to 5:30 p.m. Monday through Friday. The center is also closed for lunch from 1-1:30 p.m.

Parents react differently to having a sick child. For Katie, she immediately put on her own detective hat. She began doing her own research and desperately wanted to get a hold of an article she had heard of on infantile seizures, which Olive also experiences. Another “medical parent,” as she calls her new group of unexpected friends at the hospital, told her she needed to contact Mary-Kate Haver, the medical librarian of the Family Resource Center. 

“Our Family Resource Center is right between check-in and the café on the second floor of the Outpatient Care Center, but until you need it, you might just consider it the children’s library,” Haver explains. “We are so much more and I am pleased to say that we’ve been able to help many parents gather information on their child’s diagnosis, care or expected outcomes. We even have medical staff stop by with questions. It is a resource that our families really appreciate.”

Haver works hard to gather current, relevant information for all of the specialties treated at the hospital, and she finds that the most common requests are for oncology/hematology and cardiac care. She makes sure the information matches the literacy level of the people requesting it and even works to ensure she has translatable data for Spanish-speaking families who frequent the hospital. 

In Katie’s case, she called Haver and described the article she wanted. It took her a few days to get over to the library, but when she met Haver she was astonished at the piles of information she was given.

“From what I received, I was able to look up the areas of the brain affected by the ischemic stroke and determine other issues some of these babies face after a stroke, like epilepsy or cerebral palsy,” Katie recalls. “The more I know, the more I can understand when talking to the doctors. 

“Mary-Kate was just another rung on that ladder for me. She offered me a whole other level of education than I received from the medical staff,” Katie adds. “She has access to databases and information that I never would have found in a Google search.”  
Mary-Kate even followed up with Katie a week later to see if she needed more. 

“Many of our families go home and Google medical information that isn’t always reliable, so we really appreciate being able to offer them a resource center that has current, reliable and easy-to-interpret information that relates directly back to their child’s issues—especially new parents in the NICU,” explains Sarah Lewis, R.N. III, neonatal intensive care unit (NICU.) “And Mary-Kate is so diligent with finding everything she can for our families. She’s even been known to drop off information right at the bedside for nervous parents.”

Katie agrees. 

“It was so impressive to see that someone I’d just met cared as much as Mary-Kate,” Katie says. “Everyone at the hospital has been so concerned and so helpful. They become part of the family. I can’t tell you what it feels like just to walk back into Johns Hopkins All Children’s—even though Olive’s first months were such a traumatic time, there is always so much hope there.”

Olive is now a year old and has discovered her own path to health and happiness despite the continued challenges she is facing. She still visits the hospital every few months for checkups and her parents are kept fully informed on her care and what to expect for the next steps.

They credit the hospital for providing expert care and information, especially to new parents completely unaware of what to expect. Katie is even interested in writing her own article answering some basic questions for new parents finding themselves in the NICU unexpectedly.  


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