On Halloween night of 2022, Savannah Curran, 11, and her family joined the Haunted Happenings Parade in the crowded streets of their hometown in Salem, Mass. Amid the creative, spooky and vibrant costumes, Savannah’s caught the attention of nearly everyone who passed by. Her wheelchair was transformed into a red and silver judge’s chair from the hit NBC show “The Voice,” complete with a big red button that, when pressed, controlled the lights of the chair, played music and said “I want you!” or “Team Savannah” in bright lights along the wheelchair base.
Savannah was born with an array of medical concerns, including cortical/cerebral visual impairment (CVI, a brain-based visual impairment caused by damage to the visual pathways or visual processing areas of the brain). “Her main way of connecting with the world is by using a combination of her senses, with her hearing being the strongest. She loves music,” said her mother, Lacey Smith. This year’s Halloween costume was made by Magic Wheelchair®, an Oregon-based nonprofit, and SOLIDWORKS® build team, a company based in Waltham, Mass., that volunteered their time.
After she was born, Savannah spent six weeks in the Neonatal Intensive Care Unit (NICU) at Mass General for Children (MGfC) and was treated for hydrocephalus (build-up of fluid in the ventricles, or cavities, in the brain) and eventually had surgery to place a ventriculoperitoneal (VP) shunt to drain the excess fluid. Savannah’s family suspected that she also had a genetic condition separate from the hydrocephalus but weren’t sure exactly what it was. When she was 4 years old, genetic testing finally revealed that she had Ogden syndrome, a very rare genetic condition that affects about 100 people around the world. Ogden syndrome is characterized by developmental delay, low muscle tone and distinct facial features.
Savannah also has cerebral palsy (a disorder that affects a person’s ability to move and maintain balance and posture), epilepsy (a seizure disorder) and long QT syndrome (a disorder that can cause a fast, chaotic heart rhythm). She is also nonverbal and uses a wheelchair to move around. Lacey and her husband, Mark Curran, of Salem, Mass., knew their daughter would benefit from multidisciplinary care from a team of specialists who kept Savannah’s best interests and quality of life at heart. “MGfC was her first home and most of her care has been here all along. I am very selective as a parent and our experience at MGfC has been positive,” said Lacey. “Medical care is about so much more than just medicine. It’s also about the needs of your family and finding doctors who support your decisions about how you want to care for your child.”
When Savannah was 7, she was diagnosed with eosinophilic esophagitis (EOE, or inflammation of the esophagus caused by a build-up of eosinophils, a certain type of white blood cell, in the lining of the esophagus, which can cause difficulty swallowing or food to get stuck in the esophagus). Qian Yuan, MD, PhD, helped Savannah and her family explore treatments that not only managed her EOE symptoms, but also kept the sense of joy that Savannah and her family found in sharing meals together.
“As a provider, I wanted to keep the focus on Savannah eating for joy and for her parents’ joy. It was wonderful to see her parents prepare food, enjoy it together and feed Savannah,” said Yuan, an attending physician in Pediatric Gastroenterology and Nutrition at MGfC. “It’s very important to preserve that joy and quality of life as a doctor.”
When the first few recommendations didn’t work, Savannah’s family discussed other options with Yuan and found that antacids worked best. “It’s never a one-way street when you’re on the MGfC team. This is how I learn from parents and families,” said Yuan. “This is a journey we embark on together. Every step we took, we made those decisions together. The care from her parents trumped everything because they know their child best.”
At MGfC, families are the most important part of a child’s care team and the approach to care is guided by the belief that families know their children best. “The common goals and collaboration between us and Savannah’s family makes her care a joy. She does exceptionally well because of the exceptional care her parents provide,” said T. Bernard Kinane, MD, chief of Pediatric Pulmonary Medicine and director of the Pediatric Sleep and Pediatric Cardiopulmonary Exercise Laboratory programs at MGfC. Savannah was referred to Kinane for obstructive sleep apnea, which requires an individualized approach, especially when taking into account her epilepsy.
“It can be a challenge when it comes to epilepsy and getting a child effectively use continuous positive airway pressure [CPAP],” said Kinane. “Savannah wears her CPAP mask all night, every night, and is a model patient. Her parents are proactive about avoiding infections, which prevents coughing at night and facilitates CPAP usage.”
Savannah also receives care from Pediatric Neurology and Pediatric Endocrinology and Diabetes Center at MGfC. Thorough discussion of the risks and benefits of treatment always include her family and providers.
“We have a very team-oriented approach to patient care,” said Madhusmita Misra, MD, MPH, chief of the Division of Pediatric Endocrinology and Diabetes at MGfC. “For Savannah, that means we talk with Pediatric Neurology about the impact of hormonal changes on her seizure disorder. With Pediatric Cardiology, we discuss what the use of certain medications could mean for her heart condition, given her diagnosis of long QT syndrome.”
Despite her medical complexities, Savannah is a lively, happy preteen who loves music, adaptive sports and being outdoors. “She loves being in the water, especially on an adaptive surfboard or adaptive water skiing,” said Lacey. “She is laidback, joyful, happy and easy. She is developmentally delayed, but she is truly the easiest and happiest kid.”
Lacey’s experience with MGfC inspired her to pay it forward by joining the Family Advisory Council (FAC) at MGfC, a group that is dedicated to the development of a positive partnership among parents, children and staff to ensure the needs of children and families are met during their experience at MGfC. “There is always an opportunity to get involved and room to make improvement,” said Lacey. “When you’re the parent of a child with complex medical needs, you know what’s needed because you’ve lived it first-hand. We’re so lucky to live where we do and be so close to exceptional medical care in Boston.”
The MGfC Family Advisory Council is dedicated to the development of a positive partnership among parents, children and staff to ensure the needs of children and families are met during their experience at MGfC.
Photos courtesy of Lacey Smith. Mass General for Children and Massachusetts General Hospital do not endorse any of the brands listed on this story.