Caroline Rose Brownell was born in the morning of April 27, 2011. She had jet black curly hair and big almond dark blue eyes. She was a wonderful baby even though she was up all night. About two weeks into her life, she started vomiting bile. She would choke shortly after starting to eat. After various studies, she was diagnosed with Nasopharyngeal Reflux, Dysphagia, GERD, and Failure to Thrive. She was also diagnosed in the first year with a Stills heart murmur and Strabismus. When she was about 18 months old, she started screaming all night long. She wasn't able to speak so we didn't know what was going on. The pediatrician thought it might be night terrors. We used to wake her up and get her a drink before they usually started to see if that would help. She would still scream in pain at night.
After years of speech therapy, she told us, "the bugs are eating my feet." The doctor ran blood tests and did X-rays and they couldn't find anything. The doctor said she had lax joints and it was just growing pains. He told us to give her ibuprofen before bed. It helped some. She was a very clumsy child and was always falling. She couldn't carry anything and was always tripping. She couldn't hold a pencil or crayon tight enough to color or make an impression. She couldn't jump. She couldn't pedal a bike. She couldn't potty train. She was a bright child but couldn't hold her bladder. We tried everything. She was extremely irritable. She was affected by loud noises and tight clothing. The neurologist thought she was autistic. We didn't agree and felt there was something more going on. The first orthopedic surgeon told us that it was all behavioral and to show her tough love. We demanded a full MRI of her head and spine. We thought she might have a tethered cord. It showed that she had Syringomyelia. She had two large syrinx (6mm and 7mm) that stretched the entire length of her thoracic spine. After her diagnosis, we ran many tests.
The urologist diagnosed her with Bilateral Vesicoureteral Reflux (kidney Reflux,) as well as a neurogenic bladder and bowels, the explanation for her inability to potty train. We also found out that she has Benign Rolandic Epilepsy as well as Generalized Epilepsy. They diagnosed her with joint hyper mobility and hypotonia. She had also been diagnosed with Dysautonomia as she struggles to regulate her temperature. She gets frequent fevers between 104- 106° with no known cause. Also with no known cause, her Syringomyelia was determined to be idiopathic. Due to her bladder and bowel issues, they decided to perform a laminectomy where they removed a piece of her T12 vertebrae. She had the surgery on February 29, 2016. She recovered well from the surgery. There was some dizziness and headaches as well as vomiting from the low cerebrospinal fluid pressure. She developed a post op fever and stayed in for an extra day. She has seen an improvement with pain as well as sensory issues. While the cysts have refilled, she seems to be better with the extra space where the bone once was. Since the surgery, she has minor gait issues from the peripheral neuropathy. Caroline is otherwise a smart and happy child. She is in Kindergarten and participates in Girl Scouts and gymnastics, modified of course. She has had years of speech therapy, physical therapy, and occupational therapy. She has made amazing strides with overcoming her developmental delays. She will always be in some form of therapy and MRIs have become a part of her life. Her first genetic testing results were inconclusive. We are working with a new geneticist at Miami's Nicklaus Children's Hospital as well as her team of specialists at Johns Hopkins All Children's Hospital. Carly takes it all with stride. We are very blessed to have such an incredible little girl on this journey with us. By Beth Gagliardi Brownell