#MeetUsMonday - Meet Louise Fleming
Meet Louise.
Former ER and ICU nurse and inveterate traveler. Mom to three human children and rat terrier “Otis.” Native northeasterner who grew up in South Carolina, recent former North Carolinian, and new Crozetian who’s building a townhome with her husband, her high school sweetheart and an accountant. A nurse scientist studying support systems for people with congenital adrenal hyperplasia (CAH) and their family caregivers, a rare chronic pediatric condition that strikes one in 10-15,000 people. Passionate about this research because of her own desperate search for information and support for her son, Joey, who has CAH. The School’s new associate dean for academic operations.
HER NURSING ORIGIN STORY
“My sister is a nurse in North Carolina, and my mom was a nurse, but I began as an English major. My senior year at Clemson, I volunteered at the Children’s Miracle Network in a PR capacity, came home, and said, ‘I don’t want to be interviewing these nurses; I want to do what they are doing!’
“I truly don’t know what I would do if I weren’t a nurse; there’s nothing else for me. I think I’m the luckiest person alive because I’ve been able to do every part of nursing, and each of the roles I’ve had inform my other roles.”
WHAT SPARKED HER NURSING RESEARCH
“My third child, Joey, was about 10 days old when I told my husband I knew there was something wrong. He was losing weight, wasn’t eating well. My dad had just died, and I’d taken Joey to the doctor immediately after giving my father’s eulogy. He was admitted to the PICU. It was overwhelming and terrifying. That was my introduction to CAH, and I had a lot to learn very quickly.
“There are times in life when there’s a defining moment: for me, this was it. I’d had had two healthy girls, and did not expect my third child to have a genetic condition. It truly changed the trajectory of my life, and, without it, I never would have gotten my PhD and would never have been in this seat.
“While I was earning my MSN and working, I mentioned to a faculty member at Duke that no one had ever shown me how to give Joey an injection, and they hadn’t shown my husband, either. The pharmacist never even gave me the needles. But they tell you as a parent of a child with CAH that if you can’t respond effectively with an emergency intramuscular injection when your child is in adrenal crisis, they could die. Telling this story, my faculty member said to me that I needed to do an independent study, that I was asking great questions. She believed in me, and it set me on a path. Looking back, it makes me realize that faculty mentors really change lives.”
EXPLAINING CAH
“About one in 6,000 people are carriers. My husband and I are both carriers, and we did not know it. Many people with CAH tend to be short stature, have bone density issues, and experience cardiovascular disease risk because of obesity. They are also at risk for life-threatening adrenal crisis.
“The physiology of it is this: people with adrenal insufficiency don’t produce enough cortisol, which helps regulate glucose and blood pressure and other sustaining aspects of life, and most also don’t produce enough aldosterone, which helps retain sodium. We can replace these hormones with glucocorticoids. When healthy bodies are sick, they will circulate up to 10 times the amount of cortisol as when they’re not sick or stressed. But people without adrenal function can’t, and we have to do what’s called ‘stress dosing,’ which are extra doses of glucocorticoids, which is really tricky, especially with kids. Because all children get sick with common viruses and bacterial infections, the need for stress dosing can be frequent and challenging to manage. Infections that cause GI distress can lead to rapid dehydration, and while these children are not immunocompromised, one or two episodes of vomiting or diarrhea can become life threatening.
“Parents of children with CAH are aware that they have to do more work and take extra action when their child falls ill, but there’s a lot of subjectivity to it. I was comfortable taking the lead on that, but my husband was like, ‘What do I do?’ I was also comfortable giving Joey an injection, but for the non-medical person, that’s not easy, especially because you have to determine the dose and mix the solution. When I started doing injection trainings with the CARES Foundation in 2004, every family I met cried. I kept thinking, ‘We’re just not doing this right,’ so I started asking the question: ‘This sounds like a lot. How are you and your family doing with all this?’ That opened the door for more conversation that involved some significant gaps in family education.
“I was told by a lot of faculty that, ‘You have to take off your mom hat and put on your research hat,’ but I always thought that it is my personal experiences that give me the deep passion for helping families that have a child with CAH. At the end of all of my interactions with families, I turn off the recorder and briefly share my family’s story. I know that I take all of these families, as well as my own, with me as I help develop interventions that hopefully make their lives a little easier and provide more peace of mind.
HOW JOEY IS NOW
“He’s doing well! He’s 20 and a mechanical engineering major. He just did a podcast on being a college student with CAH, and suffered a rough infection last year that required some time in the ICU during spring break, but he is living his best life, and we are proud of him.”
UVA SCHOOL OF NURSING IN A WORD?
“WELCOMING. I have really enjoyed meeting with faculty, staff and students and hope to meet with more in the months to come. I come from a place in an area, geographically, that is a bit bigger than Charlottesville, so I like the calmer feel here. It feels good. I love leaving my office and seeing the mountains in the distance.”
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