In early 2015, Lorina Troy gave birth to her second son, JJ. Her older son, 4 years old at the time, had been a normal healthy child and she expected the same for JJ. However, Lorina and her husband Jason soon noticed that JJ’s head was getting larger at a rapid pace. It was much larger than normal.
Soon, he started vomiting a lot. Lorina took him to their pediatrician who diagnosed JJ with a stomach bug and made no mention of his head. When JJ didn’t get better, she took him to urgent care clinics and eventually a children’s hospital. Doctors agreed with the original pediatrician’s diagnosis. Finally, at the hospital, Lorina convinced a doctor to do an MRI on JJ’s head. This is when everything changed for the Troy family. The doctors returned with a diagnosis of child abuse.
The MRI had revealed a buildup of fluid in JJ’s brain. The doctors interpreted this as a result of head trauma even though it could have been various medical conditions. Both children were removed from the Troy home and Jason was charged with felony child abuse. He lost his job, they had to sell their house to pay for the legal costs, and they still ended up losing $80,000. It took 2 and a half years for JJ to be correctly diagnosed with Benign External Hydrocephalus. Once this happened, the charges were dropped against Jason, and the parents regained custody of their children.
But what is this disease that can be mistaken for child abuse? The term hydrocephalus is derived from the Greek words “hydro” meaning water and “cephalus” meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as “water on the brain,” the “water” is actually cerebrospinal fluid (CSF) – a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.
CSF has three important life-sustaining functions: 1) to keep the brain tissue buoyant, acting as a cushion or “shock absorber,” 2) to act as the vehicle for delivering nutrients to the brain and removing waste, and 3) to flow between the cranium and spine and compensate for changes in the amount of blood within the brain.
The balance between production and absorption of CSF is critically important. Because CSF is made continuously, medical conditions that block its normal flow or absorption will result in an over-accumulation of CSF. The resulting pressure of the fluid against brain tissue is what causes hydrocephalus.
The number of people who develop hydrocephalus or who are currently living with it is difficult to establish since the condition occurs in children and adults and can develop later in life. However, it is estimated over 1,000,000 people in the United States currently live with hydrocephalus. It is currently believed for every 1,000 babies born in this country, one to two will have hydrocephalus. And it is the most common reason for brain surgery in children.
The causes of hydrocephalus in infants and children are still not well understood. Hydrocephalus may result from inherited genetic abnormalities or developmental disorders (such as those associated with neural tube defects such as spina bifida). Other possible causes include complications of premature birth such as intraventricular hemorrhage, diseases such as meningitis, tumors, traumatic head injury, or hemorrhage, which block the exit of CSF from the ventricles.
Symptoms of hydrocephalus vary with age, disease progression, and individual differences in tolerance to the condition. For example, an infant’s ability to compensate for increased CSF pressure and enlargement of the ventricles differs from an adult’s. The infant skull can expand to accommodate the buildup of CSF because the skull sutures have not yet closed. In infancy, the most obvious indication of hydrocephalus is often a rapid increase in head circumference or an unusually large head size. Other symptoms may include vomiting (such as in JJ’s case), sleepiness, irritability, downward deviation of the eyes (also called “sun setting”), and seizures.
After regaining custody of her children, Lorina became an advocate for families like hers that have experienced devastating results from a child’s misdiagnosis. She lobbies lawmakers to change laws on getting second medical opinions and the role of Child Protective Services in instances like these. She also talks to the press to raise awareness of Hydrocephalus and stories of misdiagnosis like hers and many other families across the country. She has written a book, titled “Miracles of Faith,” that goes into the details of her family’s journey through the medical and legal systems and how their faith saw them through it all. It is available directly through the publishing company, Westbow Press, A Division of Thomas Nelson & Zondervan.