Parents of terminally-ill boy who can’t breathe or swallow fight medics who want to turn off life support

June 21, 2016

Rimari, who was born in April, has severe spinal muscular atrophy (SMA)
Frank Musselwhite and Danielle Manuel told son won’t see first birthday
Northampton General Hospital has applied to switch off life-support
Couple say they were not consulted, and deny son has no quality of life

Liz Hull for the Daily Mail

Published:
18:41 EST, 17 June 2016

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Updated:
19:15 EST, 17 June 2016

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Clinging to his fluffy toy for comfort, this terminally ill baby is at the centre of a legal battle between his parents and the doctors who want to switch off his life-support machine.

Frank Musselwhite, 39, and his partner Danielle Manuel, 22, were devastated when their son Rimari was diagnosed with a serious genetic condition soon after he was born in April.

Doctors said he had severe spinal muscular atrophy (SMA), a condition caused by deterioration in the nerve cells connecting the brain and spinal cord to the body’s muscles.

Baby Rimari has severe spinal muscular atrophy (SMA), which has left him unable to t breathe or swallow unaided and his parents say they were told he is unlikely to see his first birthday

Frank Musselwhite, 39, and his partner Danielle Manuel, 22, were shocked however when doctors at Northampton General Hospital applied to the High Court this week to switch off Rimari’s life-support machine

Rimari cannot breathe or swallow unaided and his parents say they were told he is unlikely to see his first birthday.

He had to be resuscitated after a difficult birth and was put into a medically induced coma for 72 hours. He now needs a ventilator to keep him alive.

But Mr Musselwhite said he and Miss Manuel were shocked when doctors at Northampton General Hospital applied to the High Court this week to switch off Rimari’s life-support machine and withdraw treatment.

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The couple say they were not consulted about the decision, and deny their son has no quality of life. They claim he recognises their voices and deserves to be given care. ‘Our solicitor said the court case may take up to 12 months and in that time it could all be too late,’ Mr Musselwhite said.

‘We know we haven’t got long with him, but now that small time will be spent battling in the courts rather than with our son. We don’t have much money and feel powerless to stop this.’

The couple say conflicting predictions about their son’s prognosis have added to their distress.

Mr Musselwhite, a full-time carer, said: ‘We were devastated when the doctors told us about his condition. They put him into a medically induced coma and put him on seven different medications. We were first told they could give Rimari a tracheostomy (an opening in the neck to help breathing) so that he could live until adulthood, but then they said that, after discussions, this would no longer be an option.’

The couple say they were not consulted about the decision, and deny their son has no quality of life

They also say conflicting predictions about their son’s prognosis have added to their distress

He added: ‘They told us the social services disability continuing care team would be able to fund 24-hour care and a life-support machine at home. Then they changed their minds and wouldn’t let the team assess him and gave no reason why.

‘Now they’ve said he will never leave hospital and he has been given between eight and ten months to live.’

He claimed: ‘We asked for a second opinion, but then we suddenly got handed court papers on Monday.

‘The papers said they had applied to the High Court to have his life-support machine turned off, and for permission to withhold care while proceedings are ongoing.

‘We couldn’t believe it. We hadn’t been consulted about it.’

Miss Manuel, a trainee hairdresser, said she believed doctors had given up on their two-month-old son. ‘It’s heart-breaking,’ she added.

‘He is the most amazing little boy. He listens to every word I say and although he can’t make a sound he says so much just with his face.

‘He is fighting for his life, so we have to fight for him.’

Miss Maneul said her son was ‘the most amazing little boy’ who ‘is fighting for his life’, and so do they

The couple have said they don’t want to spend what time they have with their son fighting the hospital but cannot give up on him

The couple, from Northampton, are trying to raise £5,000 for legal fees to fight the withdrawal of care.

Northampton General Hospital admitted it was a ‘desperately sad and difficult situation’, adding: ‘The best interests of the child are at the centre of every decision we make regarding his care.

‘We are continuing to support the family and, given the circumstances, feel it would not be appropriate for us to comment further at this stage.’