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Rotarian and former television news anchor Jennifer Johnson is now Director of Family and Community Outreach at Golisano Children’s Hospital, which is part of U of R Medicine, Rochester’s largest employer. She has been an Irondequoit resident for 17 years and joined Rotary when she was first approached, while her husband joined Kiwanis. She is a busy parent whose oldest child, an 8th grader, just got into Aquinas. Her youngest is a 4th grader at Durand Eastman Intermediate School. The loss of her middle child, “Amazing Grace,” to complications after a final surgery for a congenital diaphragmatic hernia (CDH), informed Jennifer’s career transition. Jennifer draws on her experience as a parent as well as her gift of clear and compelling communication. Her presentation began like a feature story and soon became a call to action. Grace was born in 2011 with severe CDH. Jennifer was aware that 5% of affected children do not survive, and the 50% who do must endure months of major surgeries. As a journalist, Jennifer had reported on children who had received expert care at Golisano Children’s Hospital, but she wanted to see if there was something more for her own child outside Rochester. Her research brought her to the leading hospital in Philadelphia, PA with the #1 Neonatal Intensive Care Unit (NICU) and testing facilities, where the sickest kids were cared for. The dilemma was that the first two children were 17 months apart and there was a year-old child at home. It was challenging for Jennifer and her husband to choose between what was best for each of their children. Grace was in need of an Extra Corporal Member Oxygenation (ECMO) machine to do the work of her heart and lungs, and the machine needed to be operated by an expert team. Philadelphia had both the ECMO machine and the team, but so did Rochester. Jennifer, whose name is displayed on the donor wall, asserts, “I will sing the praises of Golisano until the day I die!” Grace was cared for at Golisano between 2011 and 2013. She came home after two and a half months but re-herniated at 18 months. Jennifer is grateful to have been her mom and now recruits parents with lived experience to advocate for their children’s care. Golisano’s mission is to “help every child to reach their fullest potential.” The Club was given a virtual tour of Golisano Children’s Center, which was inaugurated in 2015 and boasts of state-of-the-art equipment along with a team that helps pediatric patients have fun while undergoing tests and procedures. Parents even have a sleeping space so they can be near their children. Some noteworthy features are the following: - MRI/PET scanner in the shape of a pirate ship
- Two-story Christie Simonetti Play Deck
- Travis and Katharine Betters Clubhouse where siblings can play
- Teen Lounge with older siblings in mind
- Ronald McDonald Family Room to allow parents to relax and spend time with their other children
- Slushie machine to help kids take fluids
Remembering what she went through as a parent with an infant in the NICU, Jennifer highlighted that Golisano has the only Level 4 – highest level of care for sick or premature newborns –NICU in the region. She added that 18 Kiwanis clubs in the Genesee Valley region partnered to fund the NICU room. Jennifer then turned to another critical point: the worsening of mental health crisis in young patients that was prevalent even before the pandemic. So many families were trying to access care, and the only option was the Comprehensive Psychiatric Emergency Program (CPEP) accessed through the Pediatric Emergency Department. This meant waiting hours to be seen by a provider before the pediatric patient and family could leave. Jennifer distributed a handout entitled Steps for Seeking Help to educate the general public about the different levels of care. This guide can be found here: https://www.urmc.rochester.edu/childrens-hospital/behavioral-health-wellness/steps-for-seeking-help.aspx To address this crisis, the Pediatric Behavioral Health and Wellness Building opened on South Avenue in the summer of 2020. The Brighter Days Pediatric Urgent Care on the URMC Campus is scheduled for completion in 2024. With its unique model, pediatric patients are able to leave after three hours. A projected 3,000 patients may be seen there. Another remarkable project is in the works, as 32,000 infants, children and teens are treated each year: - Peds ED expansion is to be completed by 2027, which means a sevenfold increase from 3,150 to 21,525 square feet.
- 39 private treatment rooms will be included (as opposed to 9 semi-private spaces currently)
Finally, the Simulation Center is noteworthy, as evidenced in this quote by Taylor Wheaton, MD, Director of the Pediatric Simulation Program: “We recently had a 4-year-old come in for a brain MRI. During the procedure, he had an allergic reaction to the dye, went into anaphylaxis, and both his heart and lungs stopped functioning. Because our team had used simulation practice resuscitating and stabilizing children who experience anaphylactic shock, we saved his life.” Jennifer mentioned that she also had to practice on a mannequin when Grace was first brought home. How can Rotarians get involved? - Become a Friends of Strong Volunteer: all candidates must undergo HIPAA training and may express their preference for the Children’s Hospital
- Host a fundraiser such as a Festival of Holiday Lights
- Join the Stroll for Strong Kids at Genesee Valley Park. The “Amazing Grace Team” is pink. Each color represents a patient that the team is rallying around or whose memory is being honored.
Jennifer was given a Paul Harris 4-Way Test token of appreciation and was asked to lead the Club in the recitation of the 4-Way Test. |
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