Bizarre Publicity-Seeking
It's surely a tragedy when a young couple discovers that the baby they've been awaiting is born with a health issue that entirely compromises quality of life, beyond their imagining. A child born with a brain abnormality is a dreadful thing to contemplate. Jason Wallace and Crystal Vitelli of Bradford experienced the misfortune of becoming parents to a little girl born with an incurable brain malformation, Joubert syndrome, affecting the baby's ability to breathe on her own.
Common features of Joubert syndrome in infants are abnormally rapid breathing, decreased muscle tone, jerky eye movements, potential mental retardation along with an inability to coordinate voluntary muscle movements. There may be physical deformities present. There is a danger of developing kidney and liver abnormalities, and seizures may occur as well. Treatment consists of stimulation, physical and speech therapy, and constant monitoring, along with screening for progressive eye, liver and kidney complications.
The prognosis for infants varies, depending on whether the cerebellar vermis is developed partially or is absent in its entirety. Some children display a mild form of the disorder and experience minimal motor disability along with good mental development. Others may exhibit severe motor disability and moderate mental retardation. Not exactly words of comfort to new parents, not quite what new parenthood promises to most people, and nothing most people would want to look forward to living with.
The parents of this baby, initially dependent on a breathing apparatus to sustain her young life prepared themselves for her early death. They attempted to persuade the Hospital for Sick Children in Toronto to remove their child from breathing support so her heart could be donated to another baby at the hospital for whom a new heart would be crucial to survival. When the hospital and doctors were persuaded this would be a humane course of action, they discovered that the baby was able to breathe on her own once taken off life support.
The viability of a newborn or an infant born severely mentally and/or physically handicapped, malformed or deformed is not a problem in the Netherlands which has a 30-year experience with life-interventions; euthanasia and assisted suicide, where both are legal. What is termed the Groningen protocol allows parents of disabled babies to request euthanasia for them. It is a choice some parents may make, unwilling to suffer the agonies of witnessing a pain-filled and quality-bereft life for their children.
The parents' plan completely awry. This is Canada, not Holland. Their baby was now capable of functioning to a degree where it was assured they would be taking her home, to live her life with her parents. Somehow they attracted the attention of a professional publicist to be their spokesperson. The parents' relations with the hospital and the doctors and the nursing staff rapidly deteriorated as they accused the hospital and staff of mistreating and abusing their child. Further publicity ensued.
Seems it became addictive. They entreated, through their publicist, for a benefactor to step forward to helicopter parents and baby on discharge from hospital in Toronto to their home in Bradford, less than a one-hour drive by car. Hoping some media agency would step forward in the process and they would exchange for exclusive personal stories and photographs. Failing that, they will scout about for the potential of a book deal, and if a book ensues, then why not a film about their travails?
Turn misfortune into a fortune? From tragedy, human venality.
Common features of Joubert syndrome in infants are abnormally rapid breathing, decreased muscle tone, jerky eye movements, potential mental retardation along with an inability to coordinate voluntary muscle movements. There may be physical deformities present. There is a danger of developing kidney and liver abnormalities, and seizures may occur as well. Treatment consists of stimulation, physical and speech therapy, and constant monitoring, along with screening for progressive eye, liver and kidney complications.
The prognosis for infants varies, depending on whether the cerebellar vermis is developed partially or is absent in its entirety. Some children display a mild form of the disorder and experience minimal motor disability along with good mental development. Others may exhibit severe motor disability and moderate mental retardation. Not exactly words of comfort to new parents, not quite what new parenthood promises to most people, and nothing most people would want to look forward to living with.
The parents of this baby, initially dependent on a breathing apparatus to sustain her young life prepared themselves for her early death. They attempted to persuade the Hospital for Sick Children in Toronto to remove their child from breathing support so her heart could be donated to another baby at the hospital for whom a new heart would be crucial to survival. When the hospital and doctors were persuaded this would be a humane course of action, they discovered that the baby was able to breathe on her own once taken off life support.
The viability of a newborn or an infant born severely mentally and/or physically handicapped, malformed or deformed is not a problem in the Netherlands which has a 30-year experience with life-interventions; euthanasia and assisted suicide, where both are legal. What is termed the Groningen protocol allows parents of disabled babies to request euthanasia for them. It is a choice some parents may make, unwilling to suffer the agonies of witnessing a pain-filled and quality-bereft life for their children.
The parents' plan completely awry. This is Canada, not Holland. Their baby was now capable of functioning to a degree where it was assured they would be taking her home, to live her life with her parents. Somehow they attracted the attention of a professional publicist to be their spokesperson. The parents' relations with the hospital and the doctors and the nursing staff rapidly deteriorated as they accused the hospital and staff of mistreating and abusing their child. Further publicity ensued.
Seems it became addictive. They entreated, through their publicist, for a benefactor to step forward to helicopter parents and baby on discharge from hospital in Toronto to their home in Bradford, less than a one-hour drive by car. Hoping some media agency would step forward in the process and they would exchange for exclusive personal stories and photographs. Failing that, they will scout about for the potential of a book deal, and if a book ensues, then why not a film about their travails?
Turn misfortune into a fortune? From tragedy, human venality.
Labels: Health, Human Relations, Social-Cultural Deviations
posted by Pieface @ 7:00 PM
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