Having a voice at Children’s

Eleanor Christiansen and her husband Tyler got an unexpected crash course in hospital life. 

Their usually healthy daughter, Greta, had few reasons to go to the doctor. Then, in January 2010, she developed croup and landed in the Emergency Department on the Minneapolis campus of Children’s Hospitals and Clinics of Minnesota.

Croup became secondary pneumonia. The ventilator became ECMO, which acts as a replacement for a child’s heart and lungs. An emergency visit became a nearly month-long stay in the hospital, with two-and-a-half weeks in the pediatric intensive care unit (PICU).

“Had she been somewhere else in the state, somewhere else in the country, there was a really good chance we would have lost our child,” Christiansen said. “We have this well of gratitude that we’ll always be able to tap and will probably never run out.”

Christiansen is about to begin her third year on the Family Advisory Council – showing her gratitude in a big way. The council comprises families whose children are past or current patients at Children’s. The group meets once a month for two hours for 10 months of the year.

Its members draw from their own experiences to make those for other families even better. The council recently created a resource guide for families. They’re currently working on a project to help families, especially with those who have special needs and may have equipment, access the hospital more easily.

“We provide a voice that nobody at the hospital can provide and be a real powerhouse of change,” Christiansen said.

Every member’s experience – the good and the bad – is important to the council, Christiansen said. And every story is important, too.

Stories like those of Michelle and Chris Jackman. Their daughter Samantha was born at 24 weeks gestation weighing a little over 1 pound and spent 128 days in the neonatal intensive care unit (NICU).

She quit her job to stay home and care for Samantha and during that time joined the NICU experience team in St. Paul. When she transitioned off the team, she joined the council.

“I wanted my experience and my knowledge to have some meaning and to have value,” Jackman said. “One of the things I’ve just loved about Children’s is that they’ve allowed me to find that value in that experience I had.”

Not every experience during their four-month stay at Children’s was a good one, Jackman said. But for every negative experience, there was a positive one, she said.

“I realize how fortunate I am on a million different levels. How fortunate I am in my personal experience. How fortunate I am to have a place like Children’s to bring my child,” Jackman said. 

Today, not only does she feel like she gets to help Children’s, she is grateful for the opportunity to share her story with others.

“Personally I wouldn’t be involved with the Family Advisory Council if I didn’t believe Children’s values the opinions and the work we do,” Jackman said. “I’m here because I know that they really value what we say and what we do, and we do have an impact.”

Interested in making an impact at Children’s, too? Please contact Tessa Billman, patient-family centered care coordinator, at 612-813-7407 today.

2 thoughts on “Having a voice at Children’s

  1. Judy Mills

    I am interested in more information of the Family Advisory Council. My daughter Jackie was a patient of Minneapolis Children’s Hospital for 30 years. Our visits ended last July, when Jackie died. Jackie lived well and right up to the end. We dealt with pulmonary, cardiac, hemotology and onocology, pain clinic and neurology along with ENT. Please send me further information. Thanks Judy Mills from Brainerd, Mn

  2. Brady.Gervais Post author

    Hi Judy,

    For additional information, please contact Tessa Billman at 612-813-7407.

    Best,
    Brady

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