This week, a US-based grandmother writes about how unethical medical practices exacerbated her daughter’s condition, which further led to her grandson being taken away by the state authorities.
I am a 67-year-old grandmother, writer and artist from North Carolina, USA. Among my hobbies is tracing the ancestry of my family. I know the names of my ancestors from Germany and Britain who settled in America in the 1600s and 1700s. My grandson’s ninth great grandfather, John Wells, was one of the 50 signatories of the Tryon Resolves; an early Declaration of Independence from Britain from Tyron County in North Carolina. The house of my fifth great grandfather still stands.
But my grandson will not know us or his history. Five years ago he was taken from us at three months of age by Child Protection Services.
It is hard to know where to begin. Perhaps the beginnings lie in the Vietnam War. My husband served in that war and was exposed to the chemical known as Agent Orange. He developed diabetes and then leukemia, from which he died at 44. In later years the Veterans Administration accepted the connection between my husband’s service and both his illnesses. We had separated before he fell ill. I left with our two children owing to his descent into alcoholism and aggressive behaviour, which would now be considered Post Traumatic Stress Disorder from his war service. At the time I did not understand, but this experience made me acutely aware of chemical exposure.
When I first got married I too was exposed to toxic chemicals working as an accountant at an auto parts centre. I developed tumours that were surgically removed. In those days little was known about the effects of repeated exposure to chemicals at work and in everyday household materials such as paint. As my health suffered doctors would shrug their shoulders; some treated me as if I was just “depressed”. I had to do the research and figure it out myself.
Eventually I learnt about what was then considered a rare condition of multiple chemical sensitivities. I found doctors who specialised in chemical sensitivities. I also found an integrative chiropractor. Together they restored my health. The key was treating the effects of too many antibiotics, a complete change in diet, avoidance of exposure to chemicals, clean air, exercise and sweating
to detoxify.
So my life experiences led me to be more aware than most people about chemicals, drugs and non-allopathic treatments. I also learnt what many who experience prolonged illness do—that medicine is not an exact science, doctors can differ in their approach and sometimes you have to take charge of your treatment by researching the drugs and diseases yourself and taking multiple medical opinions before settling on a particular course of action.
My interest in this subject also led me to study public health. I took courses from the School of Public Health at the University of North Carolina, and later worked and lectured as a child nutrition specialist. This background is relevant to understanding my later conflict with my county social services over the health and safety of my family.
Both my children did well in school. They were honours students, my daughter lettering in track and my son nominated for the prestigious Governor’s School. My daughter also had some chemical sensitivities that were treated before she started college.
At college my daughter was a straight-A student until she had a minor accident where a driver ran a red light and slammed into the side of her car. This was when her nightmare began. My daughter was not badly hurt, but began to suffer what we now understand, mostly because of the information about concussion among National Football League players, to be common symptoms of traumatic brain injury (TBI)—especially insomnia and depression. The college was not understanding, and my daughter eventually dropped out to take a break. During the break she continued her studies by using the local county library.
Then one day she fainted in the library bathroom, hitting her head on the floor and fracturing her jaw, chin and upper mouth. One tooth was knocked out, one broken in half and about 20 others fractured. She was treated by a surgeon but no one tested her for TBI, even though, I later learnt, such falls as she had had can result in brain and spinal injury. A recent brain map test confirmed that she has brain injury.
After her fractures healed, my daughter needed a lot of dental repair. At the time, I thought nothing about the prescription sedative the dentist prescribed for her. She was told to take half before she came to the appointment and to bring the other half with her. The sedative was Halcion. This is a very dangerous and controversial drug. It was banned at one time in the UK and currently the maximum permitted dose is 0.25mg. But the dentist prescribed an entire milligram. I know now that the American Dental Association had just cracked down on the off-label use of this drug by dentists who were using it to knock patients out for long procedures, in lieu of hiring an anaesthesiologist.
My daughter was never the same after that dental appointment. I watched her descend into a state of confusion and fear that I never thought was possible. I was really bewildered. In the middle of this episode one day she took off in her car, suddenly unable to recognise me.
She was found three days later by the highway patrol. She had fallen asleep at the wheel in the early morning hours, perhaps the result of her severe insomnia after the Halcion overdose, and ran off the road, hitting an embankment and jolting her head again. When I went to get her, she didn’t know who I was, and I had to talk her into going home with me. I found a neuropsychiatrist who diagnosed my daughter with brain injury and suggested she get a complete evaluation and treatment for brain injury in the state of Virginia. But my daughter resisted, afraid to get back into a car again and not realising the effects of all that had happened to her.
Hoping to persuade her in time, I consulted with the State Brain Injury Association and the University of North Carolina School of Integrative Medicine. They referred me to a neurologist, who in turn referred me to a homeopath. The research showed, and all the experts told me, that there was no drug or set treatment at the time for TBI but studies had been done with homeopathy that had produced some results. I was told that rest and time to recover was the most helpful. I worked with the homeopath and another doctor who used supplements, and my daughter improved dramatically. She calmed down and was able to sleep.
I don’t know what caused my daughter to have a setback, but she went out for a walk one day and the local police brought her home. This was how the Department of Social Services (DSS) and Adult Protective Services (APS) came into our lives. I met with the caseworker and explained about the TBI and the Halcion overdose. But from the start the county authorities decided that I was wrong. In their view my daughter was schizophrenic and had to be put on “antipsychotics” for life.
This led to a prolonged conflict with the authorities over the diagnosis and treatment of my daughter. A court proceeding was started to commit my daughter to care. In the USA, this can be done to an adult with mental conditions; the state has the power to confine you and dictate your medical treatment on grounds of mental incapacity, even over the wishes of your family.
I resisted as they wanted to drug my daughter without consulting a brain injury expert as to the appropriate medications to use. I found psychiatrists and doctors who examined my daughter and gave opinions of suspected TBI. One day, while the case was in court and I was away from home, the DSS turned up with the police and dragged my daughter off to their chosen doctor, seeking a diagnosis that would agree with them. Later as I tried to get the court to recognise the facts and the need for TBI treatment, the court sided with whatever DSS said. I was denigrated for using homeopathy and for objecting to the use of drugs on my daughter that might worsen her TBI.
I eventually got my daughter free of state control, but not before she suffered the effects of the drugs they forced upon her. In particular, she got addicted to benzodiazepines prescribed by the DSS doctors. On these medicines, my daughter had no desire to seek TBI treatment. The DSS and their doctors had told her to “forget about TBI”. She was an adult and I could only advise her. In a way, the entire episode had driven a wedge between us. Instead of helping us as a family, the system created conflict and undermined the trust between us.
My daughter tried hard to get her life back. She found a good job in another part of the state and fell in love. Then the doctor who was prescribing her the benzodiazepines left town and thus her access to the drug was abruptly cut off. The correct way to get off benzodiazepines is by slowly lowering or “tapering” the dose. Abrupt suspension of this drug can cause severe harm—prolonged and painful withdrawal, psychosis and even death. But I did not know this and neither did my daughter. My daughter came home, her relationship with her boyfriend had ended. I saw her condition deteriorating just as it had with the Halcion overdose. And then my daughter learnt she was pregnant.
The grandson I spoke of at the beginning of this article was her child. He was taken by the authorities based on their history with us. They rejected my daughter as a caregiver claiming mental unfitness when it was they who did everything to exacerbate her problems. And they rejected me, the grandmother, as a caregiver, based on my disagreement with them on how to treat her. In the next part of this article, I will tell you the story of how they took my grandson away.
The author is a grandmother, artist and writer from North Carolina, USA. Part II of this article will be published next week
The Global Child Rights and Wrongs series is published in collaboration with www.saveyourchildren.in, lawyer Suranya Aiyar’s website critiquing the role of governments and NGOs in child-related policy