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When Vicky Rhodes was born suffering from the same condition as a baby at the centre of a right-to-life case, doctors told her parents she might become a “physical and mental vegetable”.
Now aged 19, she is studying at Royal Holloway, University of London and living independently.
Rhodes needed medical assistance to breathe for her first month of life. At one year old, the same age as the baby whose parents are fighting a High Court battle over whether he should be allowed to die, Rhodes could hardly move and she needed daily nursing care until two years old. She was put on a ventilator up to eight times a year until the age of six.
Rhodes suffers from congenital myasthenic syndrome (CMS), the same group of conditions as Baby RB, the infant in the life or death legal dispute. Despite being born so seriously ill, she is now studying for a degree in management and living with four other students.
Rhodes and her mother, Frances Brannon-Rhodes, have decided to speak about her remarkable progress in the hope of persuading the mother of Baby RB that his condition may also improve.
The infant’s mother and the doctors looking after him are asking a judge to rule that his ventilator should be switched off “in his best interests”. They fear that, if he lives, he will lead a “miserable, sad and pitiful existence”.
Baby RB’s father, who is “amicably separated” from his mother, wants his son to live. He argues the baby’s brain is unaffected by the condition and that he can see, hear, feel and recognise his parents, who are both in their twenties. He has asked doctors to assess whether a tracheostomy — creating an opening in the neck to deliver air to the lungs — would allow him to be taken off his ventilator and return home.
Rhodes, from Surrey, who needs to take about 11 tablets a day to treat her condition, appealed for the infant to be given a chance. She said: “I think he does have a more severe condition than I do but I feel the key is that he is mentally fine.
“I do not even understand why [switching off the ventilator] is an option. If my mum and dad had given up on me I would not be here and there have been many times when I have been very close to not being on this planet.”
She added: “The more medication and physiotherapy I have had has made me stronger. He should be given every opportunity.”
Brannon-Rhodes describes her daughter’s childhood as problematic, with weekly hospital appointments and extensive care. By the age of five, however, Rhodes could walk about 50 yards. She used a wheelchair into her early teens but can now walk a mile on a good day.
Brannon-Rhodes said: “A doctor who was preparing us for the worst actually used those words that she could be a ‘physical and mental vegetable’. I didn’t believe the doctor. I thought she might be physically handicapped but I could see, in the first few days, that she had eye contact and responded to me.
“As a baby she was not permanently on a ventilator, as Baby RB is, but she was periodically put on one, particularly when she had a cold, for one or two weeks at a time. She would not have survived the slightest cold without mechanical ventilation.
“Nurses came into my home looking after her every day until she was over two years. We almost lost Victoria on numerous occasions. Going back 20 years, she was the most fragile child but we got through it and she is a lovely human being now.”
The grandmother of two boys with CMS has also spoken out to tell Baby RB’s mother his condition could improve.
Pat Dobbin, from Rochdale, was shocked to hear doctors suggest that Baby RB be left to die with dignity, given that her own grandsons, now aged 13 and 9, were so close to death as infants.
The 13-year-old spent many months of infancy in hospital, had breathing and swallowing difficulties and was tube fed. He still cannot walk, uses a wheelchair, and needs to be on a ventilator at night in order to breathe.
Both boys go to mainstream school, however, enjoy playing with their friends and going to concerts, the cinema and football matches.
Dobbin said: “They are well adjusted and happy and while they have had their share of problems and caused concern, they have been a great joy to their family and friends.
“The clinician is reported as saying that we owe it to these children with life-limiting disabilities to make sure they have a dignified death. I do not want my grandchildren to have a dignified death, I would rather they had a right to life.”
The severity of CMS varies widely between sufferers, and while some can be treated by medication others experience no improvement. One of the doctors treating Baby RB told the court the infant was “at the most severe end of physical disability”.
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