“No one teaches you in parenting 101 how to watch your child roll into an operating room,” said Alex DerHovhannessian of his then six-month-old daughter, Harper’s, first surgery at CHoR. “I remember turning around and getting caught in a bear hug that I’ll never forget from one of the nurses. It was the perfect hug at the perfect time.”
Four years and six surgeries later, Alex and his wife, Stephanie, still haven’t gotten used to watching Harper go to the operating room — but they are thankful for the CHoR team members who continue to go above and beyond to support them and share the excitement of childhood with Harper.
A surprising day – referral to a neurosurgeon
“Life was pretty normal,” Stephanie remembered of the months after Harper’s birth. “We had a new baby, and things were pretty good.”
At Harper’s four-month check-up, her pediatrician noticed Harper’s head circumference had grown rapidly and that she had some bulging in her forehead. The doctor sent Harper for an ultrasound that day and after getting the results, referred her to CHoR that afternoon. Alex and Stephanie took Harper to our neurosurgery clinic where she was diagnosed with hydrocephalus, which occurs when fluid builds up in the brain.
Although hydrocephalus is typically treated by the surgical placement of a shunt in the brain, the team suggested an alternative procedure in order to avoid the need for a shunt. Harper underwent two of these alternative procedures at six and eight months of age but when they failed, which is not uncommon, her team consulted with additional specialists to determine the best treatment. The expanded team recommended shunt surgery, which Harper had when she was 10 months old.
“There was a collaborative approach to her total care,” Alex recalled of the team’s decision to place a shunt. “Additional members of the neurosurgery team weighed in and came up with a better solution for Harper.”
A new diagnosis
The shunt seemed to resolve Harper’s symptoms until September 2018 when she began having episodes of unresponsiveness and fatigue. Based on her team’s recommendations, Alex and Stephanie monitored Harper at home until her symptoms progressed, and she was admitted to CHoR for what was thought to be shunt failure. Harper spent four days in the hospital, undergoing multiple tests, while her parents tried to keep their normally-active 3-year-old busy.
“At one point, she wanted to play red light, green light,” Alex remembered. “Doctors, nurses, everybody would stop where they were until she said ‘green light.’ She would giggle, and they would continue on their way. It took 10 seconds but meant the world to Harper and our family as we tried to create as much normalcy as possible.”
Harper’s symptoms continued, and for the next month, she was in and out of the hospital as her team searched for answers. She celebrated her third birthday in the pediatric intensive care unit, waking up to wrapped presents in her bed and decorations on her hospital room door. Describing the smile on Harper’s face that morning, Alex said she was “tickled pink.”
Following two more shunt surgeries, Harper still had symptoms and was eventually diagnosed with craniosynostosis, an early fusion of the skull bones. This made Harper’s case more unique. After this diagnosis, Harper’s medical team continued to consult with other CHoR specialists to develop the best treatment plan for her.
“It was all hands on deck,” Alex recalled after the craniosynostosis diagnosis. “Even people not involved in her case were engaging or being asked to engage. We even held off on a surgery to monitor Harper and rule out other diagnoses.”
In October 2018, Harper underwent cranial vault reconstruction surgery to correct her head shape and give the brain enough room to grow in her skull. The surgery was done by neurosurgeons Dr. Ann Ritter and Dr. Gary Tye with plastic surgeon Dr. Jennifer Rhodes.
Before the surgery, Stephanie said Harper’s doctors thoroughly explained the procedure, taking time to answer the family’s questions. When Dr. Rhodes explained her role, Stephanie remembers being surprised to learn that Harper’s hair would be braided rather than shaved for the surgery and that her incision would be done in such a way that her hair wouldn’t part near any of her scars.
“To think about something like that was very thoughtful,” Stephanie commented. “It was another nice touch.”
Living a new normal
On a recent visit to the Children’s Pavilion, Harper and her older sister, Abby, played on an indoor grassy area while their parents stood nearby. Other than having to remind Abby not to pick up Harper (to minimize the chance of her falling and hitting her head), Alex and Stephanie enjoyed watching the girls and seeing a giggling Harper give hugs and high fives to Dr. Ritter, Dr. Tye, nurse practitioner Michele Ellett and Peyton Wingfield, one of Harper’s PICU nurses, who stopped by to say hi.
“It really set in for me last fall that Harper’s condition is life-long,” Stephanie said. “There may be multiple years that she’s fine, but there’s no end to this.”
Even so, Stephanie and Alex are committed to ensuring Harper doesn’t grow up feeling anxious and always worried that something is wrong. In what they refer to as their “new normal,” they strive to balance the need to keep Harper safe with the desire to have her enjoy childhood.
“Harper has such a rich imagination,” Stephanie said. “Her processing of this experience definitely has come through in her play. When we first got home from the hospital, her play with her dolls involved giving them shots and wrapping up their arms and doing medical things.”
Knowing that Harper’s biggest concerns about going to CHoR are if she will get shots and if she’ll have a CT scan or MRI, Alex and Stephanie make sure to prepare her for visits in advance. Thanks to goggles and headphones that allowed her to watch The Little Mermaid during her last MRI, Harper didn’t want to leave.
“Having CHoR so close and available gives us peace of mind,” Stephanie said. “If there’s an issue, we’re not driving two hours in the car. Even when I was in the hospital with Harper for a month, I could see Abby. Having to travel from where you’re most comfortable is so disruptive and difficult. There’s something that can’t be replaced when you’re able to get your care in your own community.”
Harper will continue to see the neurosurgery team every six months and be followed by specialists from neurology and ophthalmology. The need for future surgeries will depend on the function of her shunt and how she grows.
“While many things remain out of our control and unknown going forward, we have a healthy child because of the work the CHoR team has done,” Alex said. “We have a lot to be thankful for.”