Watching loved ones battle a terminal illness is never easy. Seeing their health decline and the person they are slowly fade brings unimaginable pain. Now add knowing you might suffer the same fate. This is what the children of people with terminal, genetic illnesses experience.
Meghan Conlon appears to be a regular 19-year-old in Washington DC, spending her time figure skating and playing video games. Under this cheerful persona, is a girl who’s entire childhood was impacted by her dad being ill. Her dad was diagnosed with Huntington’s Disease, a terminal, inherited illness. He died when Meghan was 12.
Meghans circumstances are unique in this advanced age of technology. Her dad was adopted with no family history, leading to him being diagnosed on the onset of symptoms, when Meghan was two years old. Now Meghan battles with deciding whether to be tested for the condition and know her fate.
The National Institute of Neurological Disorders and Stroke summarises Huntington’s disease as a neurodegenerative condition that’s passed down from one parent with the gene, where the child has a 50 per cent chance of inheriting the condition. The disorder attacks parts of the brain. The impacts of this involve chorea, meaning uncontrollable movements, tremors, and changes to behaviour and personality.
Meghan knows how debilitating the disease can become, all too well. In the final stages of the disease her dad had severe chorea, requiring help to complete daily tasks, even walking. As the disease impacts an individual’s ability to control movements, her dad could only consume pureed food and thickened liquids to avoid choking. While his body deteriorated, he maintained his cognitive abilities. “He was funny, caring and loving. He spent a lot of his time watching the cooking channel,” Meghan recounts.
A 2021 integrative review titled ‘The perspectives of children and young people affected by parental life-limiting illness’ found research is limited on the topic.
The review concluded the stress and pressure children are under with caring responsibilities negatively impacts their wellbeing. The study found “It is rare for children to be asked about their experience when a parent has a life-limiting illness.”
Meghan says with deep regret that she resented her dad immensely. She reasons her mum was caring for her dad constantly and “didn’t have the bandwidth to give me what I needed as well.” This reflects the experience of many children with terminally ill parents. The study found the illness reduces both parents’ availability, leading to the child feeling they’ve been abandoned and dealing with frustration at the strained relationship.
Children of parents with a life-limiting illness endure psychological problems and are at a higher risk of showing levels of anxiety and depression. A reason for this is the emotional burden these children carry of living with the uncertainty of their parent’s risk of death due to their illness.
Belinda Dopita is a senior genetic counsellor at Sonic Genetics, who helps families through the Huntington’s disease genetic testing process. She says teenagers can struggle greatly because they’re young and need parenting, but often take on a parentified role.
Meghan attended therapy and her household was open to discussing Huntington’s disease, but Meghan still felt stress and confusion. Meghan cannot remember the majority of her childhood before age seven, likely because of the trauma she experienced growing up with an unstable parent. Before being medicated for Huntington’s disease her dad was irritable, short-tempered, and violent towards her mother.
Growing up with a sick dad impacted every element of Meghan’s development. To compensate for a lack of attention in childhood and to cope with the passing of her dad, Meghan took to attention-seeking behaviours as a teenager, involving “exaggerating injuries and illnesses, as well as promiscuity.”
Meghan’s grief was overwhelming and consuming. She began to have issues with discipline and school attendance and she developed an eating disorder. This led to a deterioration of her mental health as she spiralled into a deep depression.
The review explained that children with terminally ill parents often act as caregivers, having greater household responsibilities than would be expected of a child their age. Children also emotionally support their sick parents, and some developed a “protective function, being well behaved and ensuring that a positive relationship was maintained.”
The research suggests psychological problems and carer responsibilities are connected. These extra household responsibilities led to children having less time for homework, recreation, and socialising.
For Meghan, maintaining friendships outside of school became challenging. Between ages seven to 12 Meghan refused to have friends over, fearing what they’d think or ask. With immense remorse, she painfully says she was ashamed of her dad.
Dopita finds teenagers are making decisions about their lives and becoming independent, but looking after a sick parent can burden them, no matter the illness. She says they have to worry about things other children do not, such as life insurance. For some, they reconsider their career and life goals to prepare for a positive diagnosis.
The experience of someone whose known from a young age about the presence of Huntington’s disease in their family is different to someone who has grown up unaware. Dopita finds people’s attitudes to undergoing predeterminate testing depends on the individual’s stage of life, lived experience of the disease and personal way of coping with the diagnosis.
Tom Shewsberry is a real estate consultant in Rockford Michigan in the US. He recently buried his last living sibling, Danny, after he passed from Huntington’s disease. Tom’s siblings Liz, Carl, and Danny, tragically all died from Huntington’s disease.
Tom recalls visiting his grandparents’ house, where his grandma wouldn’t let the siblings go upstairs. His grandma hid his grandpa from them. Tom isn’t sure why, but believes she was hiding his grandpa to shield the siblings, so they wouldn’t be scared or surprised at their grandpa’s state as Huntington’s disease riddled his body.
Huntington’s disease was occasionally spoken about in Tom’s family. In the late 1990s Liz and her husband got divorced, the siblings noticed Liz behaving differently. Dopita explains behavioural changes can be an early sign of Huntington’s disease and can cause divorces and separations in couples.
Due to the death of his mother before she could be tested or diagnosed with Huntington’s disease, Tom and his siblings didn’t know if they could inherit the disease. Tom was the first of his siblings to be tested, enduring the worst two weeks of his life. The siblings found hope as Tom received a negative diagnosis. Tom watched as Liz, Carl and Danny all tested positive and gradually worsened. While Tom had seen the disease progress in his family, seeing his siblings, especially Liz crushed him.
Tom fondly remembers Liz as caring, kind, and confident. Following the death of their mother, Liz and Tom had shared responsibilities. “That bond we had was awesome,” Tom says through tears. Liz was the first sibling to pass from the disease at 38 years old.
Survivor’s guilt is real for family members who receive a negative diagnosis and watch their loved ones suffer, Dopita explains. She says when people get tested, a positive or negative diagnosis is life altering.
Fifteen of Tom’s family members have died from Huntington’s disease in his life. “The emotional rollercoaster of Huntington’s disease in my family is pretty awful,” he confirms. Tom prays the disease has ended in his family’s future and will not be passed onto the next generation.
For her future children, Meghan is willing to undergo testing for the gene. After experiencing Huntington’s disease as a child, she wants to avoid her children growing up with the illness looming.
But for now Meghan is unsure: “I don’t know if I want to know, because once you know that information you can’t forget it and it may influence all of your future decisions.”
She isn’t sure about how much hope is out there, if she receives a positive diagnosis.
It would change her life.
