When Sarah’s* son was just one, she made him a promise as he was being prepared for life saving heart surgery.
Moments before Tom* was taken on a trolley to the operating theatre, she kissed him and vowed that if he survived she would do everything within her powers to protect him for the rest of his life.
For 23 years, she has faithfully honoured that pledge to her only child, who has a congenital heart condition, a chromosomal abnormality and acute learning disabilities – he has the mental age of an 18-month-old.
But now her instincts as a mother are being legally tested in one of the most powerful (and some say secretive) courts in the land after she dared to question whether the Covid-19 vaccine was safe for her vulnerable son, now 24.
For nearly three years, the case has played out in the Court of Protection, where a lawyer has been assigned to represent Tom’s best interests.
The issue the court is grappling with is whether the greater good – for Tom and society – will be served by him being injected, despite the risk the vaccine could pose to his complex medical conditions.
Sarah, 59, has agreed to speak for the first time about her family’s ordeal, which she claims shows the state being “heavy-handed” by insisting it knows better than a mother what is best for her son who is, to all intents and purposes, still her baby boy.
Neither the mother nor her child can be identified due to the strict reporting conditions imposed by the court. They have been given pseudonyms to protect their anonymity.
Speaking from her home in the north west of England, Sarah insists she is not an anti-vaxxer nor someone prone to trawling the internet for absurd conspiracy theories. She is far too busy as a full-time carer. More importantly, she has ensured he has had all his childhood vaccines.
As Tom sounds an approving gurgle of glee from the dinner table, she cuts up his food into bite-sized pieces before removing from the tight grip of his paw-like hands his favourite children’s book, Bing’s First 100 Words.
“I have to look after him in the same way as when he was a baby,” she said, handing him a spoon and gently repositioning his glasses. “But, that is exactly what he is to me. He is no different today to when I kissed him before his operation back in 2001.”
Her fear about the vaccine stems from whether the messenger RNA vaccine (mRNA) – which essentially tells a cell how to make a protein to trigger an immune response to Covid – is suitable for someone suffering a chromosomal abnormality and a heart condition.
Tom’s severe learning disabilities were caused largely by him having Partial Trisomy 13, a rare condition which means he has an extra chromosome that, among other things, impairs brain development (he has no speech and needs help going to the toilet, washing and getting dressed).
The corrective heart surgery was a result of him being diagnosed with Tetralogy of Fallot, an equally rare congenital heart condition affecting the very structure of the organ.
To this day, his mother carries a special card to alert medical services that certain procedures may put his life at risk; a trip to the dentists culminates in him taking antibiotics to ensure no potentially fatal bacterial infection has entered his bloodstream, which could threaten his heart.
In 2021 when the country was still in the grip of lockdowns and social distancing, Sarah was repeatedly asking medical professionals involved in her son’s care whether this new mRNA vaccine was suitable for Tom.
After all, he had had Covid twice and recovered as quickly as his mother, so she believes he has probably had acquired some natural immunity.
“I went to talk to my GP about my concerns,” she said. ““At the end of our chat when I said I was concerned about Tom having the vaccine, the doctor simply said he needed to tick some boxes for the relevant “agencies”. I didn’t think any more of it.”
A few days later a social worker made an unexpected visit. Then, a physiotherapist turned up. On each occasion Sarah was questioned about why Tom had not yet had the vaccine.
“I was shocked,” she continued. “I explained that I was worried there was a possibility the vaccine could cause myocarditis or pericarditis [conditions adversely affecting the heart].
“I felt they should be proving to us that it’s safe, not me trying to prove it is not safe.”
In April that year, a court summons landed on her doormat, signalling the beginning of a protracted and ongoing legal tussle with the state.
Judge Burrows, sitting in Preston, summed up the nature of the legal “impasse”; doctors who wanted Tom vaccinated had based their argument “on the advice given to clinicians by effectively the UK Government”, however the mother felt “the risks posed by the vaccine were unclear and maybe significant.”
He stressed how the role of the Court of Protection was “to make decisions on behalf of people who are unable to make that decision for themselves on the grounds of mental incapacity”.
Despite his acute learning disabilities, Tom was in years an adult, so the court had wrested responsibility for him from his mother. Hearings focused on whether “some cardiac issues … raised by the vaccine” meant it posed a greater risk than Covid itself.
But in his 2022 judgment, the judge was at pains to point out how the court was “ill-equipped .. to act as an adjudicator as to whether the vaccines that are part of the Government’s anti-Covid policy are really safe, or whether they should have been brought into general use before they should have been, with inadequate regulatory supervision.”
Instead, he summed up how Tom was in an at-risk group due to his disabilities and “the evidence is that vaccines do give protection against serious illness and death.”
The judge added that a “further factor” he had to consider was whether Tom “may have made an altruistic decision to receive the vaccine to protect the community at large”, similar to the way the Government argued that the vaccination was a way to protect the vulnerable and the NHS a few years ago.
He continued: “In other words: might Tom have behaved like a responsible citizen and considered the effect of his decision on other people had he made the decision for himself.”
He concluded that “it is in Tom’s best interest to receive the vaccine”, adding how “Covid is still a dangerous and potentially fatal virus” and the Government had sought to “protect the healthcare infrastructure.”
Despite social distancing, mask-wearing and orders to stay at home now being a thing of the past, the court battle is still ongoing.
Sarah’s lawyers have dug in for a long fight by setting up a crowdfunding site – “Forced Vaccinations On Our Loved Ones” – to help pay for legal costs. So far, those who believe mother knows best have raised more than £35,000.
They are now appealing the ruling, backed by the evidence of a professor, a world expert in Trisomy 13, who has told the court the vaccine could pose a threat to Tom.
He is one of a number of people who have claimed the vaccine has health implications, possibly to the heart.
So far, Sarah has spent £25,000 of her own life savings on legal fees, to try to prove there were risks involved if her son was given the vaccine.
Far more could be at risk for her. If the court ultimately orders that Tom should be vaccinated, any attempt by his mother to prevent that happening could culminate in her being jailed or assets being seized.
Coincidentally, she insists she has not had the vaccine because her son actually inherited the chromosomal abnormality from her. “Tom’s unique genetic make up and heart condition are the only reasons for my concerns,” she said “‘He is currently a fit and well young man with no comorbidities and he takes no medications.
“The injection could potentially injure or kill him. If he is given the vaccine, one of my greatest fears is that he cannot speak and express how he is feeling should he have an adverse reaction.
“I have dedicated my whole life to overseeing his health and worked tirelessly with the medical community to develop intricate and personalised care regimes,” she said. “It’s my care which has contributed to Tom living until he is 24, despite Trisomy 13 often resulting in a limited lifespan.
“For the judge to believe that Tom would take it for the sake of others – the so-called altruistic view – denies the possibility that there is any risk at all to Tom.
“I would think he’d protect his own life by not taking it.”
After wiping clean her son’s face Tom sits up to kiss his mother gently on her cheek. Sarah pauses before saying: “All I have ever wanted to be is a great mother and to protect my son. I believe that as his mother, I know what is best for him.”
*All names have been changed to protect the family’s anonymity.
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