Ella was born on October 22, 2007. From the beginning, her life has been full of challenges. Ella was born with Spina Bifida (myelomeningocele), and Chiari Malformation Type II. Since her Spina Bifida was detected during a 20-week ultrasound, Ella was born at Children’s Hospital of Philadelphia.
At one day old, she underwent surgery to repair the myelomeningocele in order to prevent infections and additional damage to her spinal cord. At a week old she was discharged from the NICU, however a week later, we returned to the hospital. Ella developed hydrocephalus, as most babies with Spina Bifida do. Hydrocephalus is a buildup of cerebral spinal fluid in the ventricles of the brain.
At two weeks old, Ella had surgery to place a VP shunt which would drain the excess fluid from her brain. While the shunt was necessary, it has come with so many complications. Ella’s shunt failed and had to be surgically repaired 3 times in her first 6 months of life, and a total of 10 times by the time she was 10 years old. Each shunt malfunction meant a trip to the emergency room, surgery, and a hospital admission in Philadelphia.
In 2018, even after all of the shunt surgeries, Ella continued to struggle with headaches, dizziness, blurred vision and chronic pain. So, we sought a second opinion at Boston Children’s Hospital. At this time, Ella underwent surgery in Boston to have a new programmable shunt placed. This would allow her neurosurgeon to adjust the shunt setting without surgery and manage the symptoms of her hydrocephalus. Ella had 4 wonderful “surgery-free” years from 2018-2022 and we transferred all of her care to Boston Children’s Hospital. Although Boston is over 200 miles from home, BCH has an excellent Spina Bifida clinic and team of neurosurgeons, which made the drive worth it.
Unfortunately, the past three years have been the toughest on Ella.Since 2022, she has had 7 more shunt malfunctions and one shunt infection. Now a High School Senior, she has missed countless days of high school and has missed out on many events and experiences that most high schoolers take for granted. She continues to struggle with debilitating headaches, dizziness, blurred vision and severe chronic pain. She does her best to continue on with school and her daily life. As a working mom, I do my best to keep up with the follow-up appointments with specialists to see what else can be done to help her. Ella has always been such a resilient young lady, but the past few years have been extremely challenging for her and for our family. She hopes to be feeling well enough to compete in her adaptive sports again soon. After graduating high school, she hopes to attend college and then pursue a career in Early Childhood Education or in Social Work.
We are so honored to have been selected by the Shannon Daley Memorial Fund. We are forever grateful for this amazing organization.