At only six months old, Madeleine Morris was diagnosed with hypothalamic hamartoma, a rare, benign brain tumor that can cause various symptoms including hormone imbalances, epilepsy, behavioral disorders and, although rare, hypothalamic obesity. There are surgical and radiosurgical treatments available for hypothalamic hamartomas, but hypothalamic obesity is a common side effect of these interventions. Therefore, many families choose to avoid these treatments.
Madeleine’s hypothalamic hamartoma made her hungry all the time, even after she had already eaten. Her mother Amanda, who is a nutritionist, recalls how difficult it was for Madeleine to keep her weight under control throughout the years. "In her early teens, she was gaining about 17 pounds every 6 months with no sign of a drug or surgical cure in sight."
It was also emotionally and physically taxing on Madeleine, especially when she entered her teenage years. "As a parent it was so upsetting to not be able to tell her it would be ok," said Amanda.
In 2018, Amanda read an article about Nicklaus Children's Hospital's FDA-approved research study designed to demonstrate the safety and feasibility of focused ultrasound, a form of incisionless surgery, for the treatment of benign intracranial tumors in children and young adults. In 2017 Nicklaus Children's became the first hospital in the world to perform a focused ultrasound surgery on a pediatric patient with a hypothalamic hamartoma tumor.
The Morris family immediately contacted Nicklaus Children's for a consultation. The entire family, including Madeleine's father, David, and her sister, Jessica, flew to Miami from their home in London, England in 2019 for the life-changing procedure.
Dr. John Ragheb, Director of the Division Neurosurgery at Nicklaus Children's Hospital and medical investigator of the focused ultrasound clinical trial, performed the focused ultrasound surgery.
"Madeleine's recovery has been remarkable and a testament to tremendous potential for focused ultrasound therapy to change lives, said Dr. John Ragheb. We believe Madeleine is the first child cured of hypothalamic obesity with focused ultrasound therapy. This effort is a promising first step in the advancement of novel treatment of brain tumors in future," he said.
As with the other children treated in this study, Madeleine's recovery was quick and she left the hospital 48 hours after the surgery. Most rewarding was the immediate change in Madeleine’s eating behavior. She was no longer hungry all the time and rarely finished her meals.
It has been a year since the surgery and Madeleine says she feels brand new. She has lost 26 pounds and has gained a completely new appreciation for life.
"I do not have the words to describe how we were made to feel, by everyone, in Miami. Every single person we encountered in the hospital was indescribably kind, dedicated and incredibly talented. We owe Madeleine's life to Dr. John Ragheb and the entire medical team involved in her care," said Amanda.
