By Janelle F.
Brianna, my daughter, was born as a micropremie at 25 weeks gestation. Brianna’s stay in the Neonatal Intensive Care Unit (NICU) was uncomplicated. When Brianna was 2 years old, on Nov 30, 2016, she was hospitalized with bacterial meningitis which was complicated with mastoiditis in osteomyelitis of the cervical spine. It was also complicated by pneumonia in sepsis. She survived this and went to rehabilitation at Children’s Healthcare of Atlanta (CHOA). It took about 6 months for her to completely recover… learning how to walk, speak and feed herself. One surgeon In Gainesville said that he had found the source of meningitis and it was a CSF leak in the inner ear mastoid area. She had surgery and did not have meningitis for 4 months. Not until viral enterovirus meningitis in July 2017.
Then in September 2017 she was readmitted to hospital ICU for bacterial meningitis. The surgeon refused to do anything about it stating that she was very high risk for meningitis for the 1st year after surgery. So we accepted his answer. On Thanksgiving Day Nov 2017 she was admitted to hospital with a resistant strain of strep pneumonia. She was life flight transferred to Wolfsons childrens in Jacksonville. A major CSF leak was found via cisternigram. A Neurotologist preformed a mastoidectomy which left her deaf in the left ear… but saved her life.
In April 2018 she had To have a revision of the prior mastoidectomy because there was an abnormal MRI which showed that there was still a CSF leak in the inner auditory canal and middle ear. Surgery was a success in Brianna began to do better than she ever had. She was meeting milestones in gaining weight. We had decided to keep her home while she healed.
In June 2018 she was again admitted to the hospital for meningitis. It looked as if it were bacterial but thank God it was not and was diagnosed as aseptic meningitis. And she was treated for 74 hours with antibiotics just to ensure it was not bacterial until pathology came back with negative CSF cultures.
On July 22nd 2018 Brianna was admitted to the hospital for dehydration related to C. Diff or Clostridium Difficile. This hospitalization was the worst. Brianna began to have uncontrolled seizures. Anti seizure medications did not work and she ended up in the ICU intubated for 4 days. She spent 10 days in the ICU and she was diagnosed as an epileptic despite epileptic medications not working. SEIZURES were not controlled. We were sent to Miami children’s hospital which was a fight between the hospital and insurance. In Miami it was found that she had hydrocephalus of unknown etiology. Her cerebellum shifted causing a mild Chiari. They performed a lumber puncture and removed several ounces of spinal fluid. Diuretics were started. Since then she has woken up and is walking and talking and acting like a four-year-old.
However the thing that has been lost is her vision and she has been diagnosed with cortical blindness that was effectively diagnosed running a visually evoked potential test. She is a candidate for surgery to have a ventricular shunt that would control the levels of spinal fluid in her brain. However with her history of meningitis she does not meet the criteria for such a surgery, because if she were to suffer another episode of meningitis the glucose and protein would obstruct the shunt.
Currently we are back home in Pensacola and Brianna is doing fairly well despite her blindness. Her pediatrician has sent all medical records to Cincinnati which has been accepted by a neurosurgeon. So she is under review by their group and possibly a candidate for a research program. I am very grateful that millions of people are praying for Brianna. At this point I can only plan for Brianna’s future. Cortical blindness does not have a good prognosis.
If you know of anyone that can help this family in setting up a trust account for Brianna, please contact the Mollaret’s Meningitis Association at [email protected] or 208-820-1662 with the information.