Family of newly diagnosed 4-year-old expresses gratitude for clinic team’s support
As one of the busiest pediatric endocrinology clinics in the region, the education team at Beaumont Children’s responds to hundreds of phone calls from anxious parents each week on issues ranging from glucose level management to food intake, mood, exercise and sleep.
To better serve their patients and families – many of whom leave the hospital overwhelmed by all that goes into managing their child’s diabetes – and address many of those middle-of-the-night questions, Maria Borri, RN, came up with the idea of creating an eight-part video education series.
“Most families, when they leave the hospital following a first-time diagnosis of Type 1 diabetes, are a little shell-shocked,” said Borri, who’s worked as a nurse specialist at Beaumont Children's Hospital Endocrinology Clinic in Royal Oak, for 18 years. “The news itself usually comes as a bit of a surprise and in the beginning, digesting all the things that need to happen to manage a child’s glucose levels is a lot.”
Borri added, “We know it’s scary. And that’s why we wanted to come up with a way to address questions 24/7.”
Launched at the end of last year, Managing Childhood Diabetes Videos will soon be available in Arabic and Spanish and covers topics such as insulin calculations and dosing and transitioning from home to school and beyond.
“We knew our videos were making an impact when parents started saying things like: ‘Oh yes, Emily recommended that in the video. Wait. Do you know Emily?’” Borri said with a laugh.
Borri is referring to colleague and nurse specialist Emily Falk, RN, who in addition to caring for patients and families in clinic, narrates some of the videos. Falk herself was diagnosed with Type 1 diabetes at the clinic 30 years ago, at 3 years old.
“The positive experience I had with an amazing team of people during what could have been a very difficult period in my life is what inspired me to pursue this profession,” said Falk, 34, who gave birth to her second child in October. “Very few things give me greater joy than to help people find success with this diagnosis. I’m here to tell them: ‘It’s not always easy. I have good days and bad days. Even if I eat the same thing every day, my numbers shift and bounce. You can do it. I’m the proof.’”
Mom Stephany Hughey, of St. Clair Shores is one of Falk’s admirers. After meeting Falk in person for the first time during daughter Jaxsyn’s recent doctor’s visit, Hughey said she hopes Jaxsyn grows up to be just like Falk: strong, smart, independent – and motivated to give back.
“Like any parent, more than anything you want to know your child is going to be OK,” Hughey said. “When you meet Emily, it’s clear. She isn’t just surviving. She’s thriving. It’s a beautiful thing.”
The Hugheys first noticed something wasn’t quite right with then-3-year-old Jaxsyn in December. Her mood was off, she had low energy and was losing weight, particularly after she, older sister Dahlia and mom Stephaney got the flu. Then in early January, the excessive thirst and frequent urination became so intense, Jaxsyn was up throughout the night crying and miserable. Google searches suggested Type 1 diabetes may be the cause – and when the family came to Beaumont Children’s at the recommendation of their pediatrician, their fears were confirmed.
“No one on either side of our families has Type 1 diabetes,” Hughey said. “So yeah, it was pretty shocking.”
To top things off, husband and father Demetrius was in Tennessee on a work trip. So Stephany navigated those first difficult days alone.
“Learning how to inject medication multiple times a day to deliver a precise dosage based on what was going on in her little body at the time – yes, it was a lot. But the team at Beaumont Children’s was extremely patient and supportive. And my husband – he was right there with us, watching the videos, even in the airport. And when he was finally able to join us here at the hospital, the doctors were fantastic. We learned so much. Including that getting the flu likely triggered (the inevitable) onset. They broke it all down for both of us again together.”
Since those first challenging days just a little over eight weeks ago, things in the Hughey household have started to settle down. Jaxsyn was even able to enjoy mini chocolate cupcakes with her pre-school classmates on her 4th birthday earlier this month.
And oldest daughter, Dahlia, has proven to be a thoughtful and engaged big sister, setting up supplies for mom before injections, and putting them away afterwards.
“In those first few weeks, my husband was away a lot for work training, so it was just me and Dahlia taking care of Jaxsyn,” Stephany said. “She was amazing.”
Still, in typical big sister fashion, sometimes when Jaxsyn gets fussy, Dahlia will ask: “Mom, is she low?”
Corewell Health’s pediatric endocrinology clinic in Southeast Michigan sees approximately 100 new onset cases each year, while providing continuous follow-up care to more than 1,200 current Type 1 diabetes patients at its clinics in Royal Oak, Troy and Dearborn.
“If there is one thing I would want other parents to know it’s this: You may feel like you can’t do this, but you can, you will. Your instincts kick in, and in a relatively short time, you will be back to ‘normal.’ You can do this!”
For more information visit Beaumont Children's Pediatric Endocrinology Clinic and view the team's amazing 8-part education series.