Six-year-old Maria Noles counts the days until she gets to see two of her favorite people. They’re not relatives or friends from school. They’re her buddies, Mr. Dave and Ms. Ashley, at CHoR and they’ve formed a special bond with Maria throughout a tough journey.
Maria’s pediatrician noticed her head was enlarged at her 1-year checkup. By the time she was 15 months old, it had crossed the hundredth percentile and the pediatrician urged her mom, Stephanie, to schedule an appointment with our neurosurgery team at CHoR. That’s when they met Michele Ellett.
Michele ordered a CT scan to get a good look at Maria’s head and worked her magic to have it scheduled the same day.
“We got the scan at 2 p.m. and made it back to Short Pump to pick my older daughter up from my parents’ house,” said Stephanie. “Twenty minutes later Michele called and told me to come back to the emergency room right away. There was a mass. I grabbed my mom, called my husband and hopped in the car.”
Michele met the Noles family in the ER to review the scan and discuss the best course of action.
“Maria needed immediate care because she developed obstructive hydrocephalus. She had a tumor in an area of the brain called the posterior fossa. The tumor was blocking the outflow of the cerebrospinal fluid and causing it to back up. This caused increased intracranial pressure and required a drainage tube until she was safely able to go to surgery to remove her tumor,” said Michele. “Within only a few hours we evaluated Maria in clinic, obtained imaging, transferred her to the PICU and made a plan to treat her hydrocephalus and her tumor. Neurosurgery, radiology, PICU, OR staff, pathology and child life worked together to get Maria the care she needed.”
When the Noles family got to the PICU, Dr. Jesse Bain offered reassurance during a time of great fear.
“He told us he was going to take care of Maria like he would do with his own daughter,” recalled Stephanie.
Later in July, Maria started experiencing new symptoms. It turns out fluid had built up again and blown a hole through the dura (the membrane layer just under the skull). She had surgery to fix it in September and it ruptured again three days later. The next step was to see if it would heal on its own, while wrapping her head each day for protection – but it never did. By January, the decision was made that Maria needed a shunt, which was surgically placed in a ventricle to drain fluid away from her brain and into the body where it could be absorbed.
At this point Maria and Stephanie had met Dave Bessom, MRI technologist, during their biweekly visits for imaging to keep an eye on the healing progress and any further developments. Dave quickly made an impression on them for his kindness and patience.
“Maria formed a bond with Mr. Dave. I remember sitting on the edge of the MRI table one day and Dave was squatting against the wall,” said Stephanie. “He reached his hands out to Maria. She walked to him, and he scooped her up. He didn’t realize it at the time, but those were the first unassisted steps she’d ever taken.”
Then, one of Maria’s regular MRIs showed something no one wanted to see. The tumor had regrown. Maria went in for her second resection in May 2019. While the surgery was successful, an MRI a few months later showed that her brain (the ventricles where the fluid is made) had collapsed because the shunt was over draining, and she had two subdural hematomas (where blood collects between the brain and skull). In the last of her series of neurosurgeries, fluid was once again drained, and the shunt fixed.
Maria had five major surgeries within a 12-month period, all before her third birthday.
“We lived more at CHoR than we did at home during that year,” recalled Stephanie.
While it wasn’t the path Stephanie and her husband, Richard, would have chosen for their daughter, Maria’s experience has introduced them to people who have become very special. In addition to “Mr. Dave,” nurse anesthetist “Ms. Ashley” became a key part of the regular MRI visits. Ashley and Dave come into the radiology prep room to get Maria, hold her hands walking back to the MRI and let her choose which flavor anesthesia mask she wants. They work as a team to make sure she’s comfortable.
“The pediatric centered teamwork in addition to the support from Maria's family has allowed her to grow unafraid of what we do here,” said Ashley. “I now tell her to show me what we do, and how we do it. Maria has embraced this and thoroughly enjoys telling us how to do our jobs. As a CRNA, I find it so important to match the child's interactive needs. If they need me to be a level 10 for the party, I am there. If they need me to be calm and soothing, I am there. Maria is a level 10 party kind of girl! The bonds Dave and I have created with Maria are a result of our team approach to care.”
Maria is doing so well now, she’s down to only two MRIs a year – which is wonderful, albeit less time with her buddies.
“She looks forward to scans. The first thing out of her mouth when she wakes up is, ‘Where’s Mr. Dave, where’s Ms. Ashley,” said Stephanie. “She tells everyone at school about them. She wants to tell them all her stories. They’re so patient and kind. They make everything so comfortable for her. They hold a very special place in our hearts for sure.”
Maria has had quite an impact on them too.
“Oh gosh. Maria is special in so many ways. It's been really incredible seeing her go from an almost-toddler taking her first steps to this spunky, talkative kid who is excited and happy to see us and always asks her mom if we can come home with them when they leave,” said Dave. “Personally, it is difficult to overestimate the impact caring for Maria has had. She was the first patient I truly connected with on my own as opposed to patients with established relationships with team members, and it has been one of the joys of my career to see her heal and grow, and to watch her personality come out."
Maria was slow to say her first words, but her mom says she’s “been a chatterbox” since she started talking. She loves telling stories, watching movies and going to the zoo. She can do pretty much everything her big sister does. They especially like riding scooters together and playing with their dogs. Maria has also been able to play tee ball and is currently trying her hand – or foot – at soccer. And, although she has some cognitive processing delays, she’s with her friends in a regular first grade classroom at school with the support of her parents and our neurosurgery nurse coordinator, JoAnn Tillett.
JoAnn has been instrumental in Maria’s care within and outside the walls of CHoR through the years, most recently informing the school about Maria’s shunt and what to do if there’s an issue, helping with IEPs, coordinating neuropsychological services and much more.
“There are a lot of needs that come up long after a clinic visit or hospital stay. It can become overwhelming as kids get to school age, and even beyond. Every child’s situation is different. It’s my job to help parents navigate this and advocate for what their kids need and deserve,” said JoAnn, who’s been in her role for 38 years and seen many of her patients grow into adults. “There is never a time I’m too busy to help our families. I love my job.”
Throughout this process, Stephanie created a form to provide essential health and safety information to Maria’s school. JoAnn liked it so much, she’s now offering it as a template for other families.
“It takes a village and there are so many people at CHoR who are part of our village to keep Maria safe and help her have a normal, healthy life,” said Stephanie. “Had Michele not helped us on that first day at CHoR, I don’t know where we’d be.”
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