Imagine being 5 years old and finding out you’re getting surgery one day before Valentine’s Day.
For Lucia Lazarus, who is now 15, that meant no candy and missing her 100th day in kindergarten. She’d been diagnosed with a Tethered Spinal Cord, a rare neurological condition in which symptoms vary from person to person. In Lucia’s case, it led to urinary incontinence. She needed tethered spinal cord release surgery.
Lucia and her family were unsure of what to expect, but in true Gillette fashion, a child life specialist walked them through plans for the day of surgery so they would be prepared. And as a bonus, the Gillette team filled Lucia’s room with Valentine’s Day decorations. Lucia’s mom, Kara Lazarus, was overwhelmed with gratitude.
“We didn’t know much about Gillette before the surgery,” said Kara. “We later found out people traveled from all over to get this surgery at Gillette. We felt lucky to have it in our backyard. We wanted to do all we could to give back.”
Kara and Lucia decided to create Valentine’s Day bags for Gillette patients, and they’ve been doing it for seven years now. The first year, the family put the bags together themselves but they eventually got their community involved by enlisting help from some Edina, Minnesota hockey teams.
This year, Lucia’s little brother, Theodore, 11, and his team also helped fill the bags. The family and their friends put together 50 bags packed with nut-free treats, three types of playing cards, stuffed animals, bubbles, Pop Its, pens and much more.
“We plan to do this every year until Lucia goes to college. For adults, Valentine’s Day may not mean much, but it’s a big deal for kids. We really wanted to do something to make the day special for them and let them know we care,” said Kara.
Coordinating the Valentine’s Day project was not enough for Kara. Before the pandemic, she enjoyed volunteering at the Ronald McDonald House on campus and connecting with other families who’ve come to Gillette.
“A lot of us just want someone to talk to about our kids. Someone who understands,“ she said.
Kara also joined Gillette Children’s Foundation’s Philanthropy and Advancement committee, where she learned more about Gillette’s research when it comes to virtual reality and pain management.
“Pain can affect everything. If you are in a lot of pain nothing else really matters. It impacts family, sleep, enjoyment of life, your ability to communicate and go to school,” says Chantel Burkitt, PhD, a clinical scientist who leads the Pain and Comfort Research Program at Gillette.
Burkitt has been studying the use of virtual reality (VR) for pain management in children since 2016 when she saw VR on the cover of Time Magazine. At that time, VR was being used to comfort adults preparing for open-heart surgery. Always thinking about Gillette patients, a light bulb went off for Burkitt.
“So many of our patients have limited abilities regarding their movement,” said Burkitt. “If you don’t have hand function, it’s hard to play with toys to distract, and if you don’t have verbal abilities, maybe you can’t engage in singing or some of the other interventions that we use to try to distract. I wondered if VR headsets could help provide distraction in those cases.”
The anxiety that comes with the expectation of pain can make procedures even worse for children. Kara knows that all too well. She has been known to hold an iPad to help distract her daughter while she’s being prepped for surgery. VR was not available during those times.
“I was intrigued that Gillette is offering this resource that’s fully endorsed and supported by the hospital. I am so impressed by this,” said Kara.
One of Gillette’s ongoing studies is using VR during Botox injections for patients who have cerebral palsy. The patients in the study considered their pain and anxiety well managed with or without VR but rated the overall experience to be considerably better when VR was used.
The distraction provided by the virtual reality headsets allowed care providers to reduce the amount of medication used during the procedure while still effectively managing the pain. This helps push Gillette towards the goal of lowering the use of medications for certain procedures. Nitrous oxide, for instance, has side effects of hallucinations, nausea and vomiting. The reduction of nitrous, in association with VR use, has eliminated or reduced hallucinations for some patients.
Burkitt says her dream is for there to be no unnecessary pain at Gillette.
"That means understanding that things such as shots will hurt, but care providers will do all they can to manage pain in an evidence-based way,” says Burkitt. Gillette has 28 VR sets, but she would like to add at least six more to ensure clinics in communities like Alexandria, Baxter and Brainerd, Bemidji, Mankato, St. Cloud and Willmar also have their own headsets.
Do what you can
The Lazarus family has made financial donations to the VR program because of the strides the team is making. In addition to VR headsets, gifts like those from the Lazarus family fund the development of educational materials and ensure all care providers have access to the tools they need to make a visit go as well as possible for patients.
“We have been lucky to donate, but there are so many ways to contribute,” Kara said. If you are looking for ideas to help Gillette, talk to your care provider and child life specialist to find a way that works best for you.”
The family has three more years left before Lucia heads to college and their commitment to make Valentine’s Day bags comes to an end. They will always be grateful to the Gillette family for caring for Lucia and providing an opportunity for them to pay it forward.
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