‘I just pray we have long enough to save her’ Mother says daughter, 18, is dying before her eyes after NHS treatment for rare form of spina bifida was put on hold during pandemic
- Caroline Toombes said her daughter Evie is unable to receive her treatment
- The teenager, from Skegness, Lincolnshire, cannot go in for intravenous feeding
- Evie’s digestive tract does not work and she cannot receive enough nutrition
- Here’s how to help people impacted by Covid-19
A mother has revealed her anguish as her 18-year-old daughter declines before her very eyes and struggles to receive the treatment she needs amid the coronavirus crisis.
Caroline Toombes said her daughter Evie, from Skegness, Lincolnshire, whose rare form of spina bifida means her digestive tract does not work, is unable go into hospital for the treatment she needs due to the pandemic and is ‘starving’.
The mother went on to explain that her daughter, who condition leave her unable to receive enough nutrition, cannot have an intravenous feed at home because care companies are not taking any new referrals.
Ms Toombes’ pleas come after it was revealed a number of patients have had their treatments put on hold while the NHS diverts resources to fight the virus.
In a heartfelt message on Facebook the teenager’s mother said: ‘I am the mother to an 18-year-old girl and I’ve spent all day in hospital today having another infusion at a local hospital which I’m really pleased about.
Caroline Toombes said her daughter Evie Toombes (pictured on May 1), 18, is declining before for her very eyes as she struggles to receive the treatment she needs amid the coronavirus pandemic
Ms Toombes (pictured) said her daughter cannot have an intravenous feed at home and has seen her BMI plummet to 12.7
‘I’ve also listened to a speech from Matt Hancock saying that the NHS are providing the very best care to everybody that needs it. Well I’m sorry but my daughter is starving. She has a BMI of 12.7.
‘She cannot go in for intravenous feeding because there is Covid on the ward.
‘But she can’t have intravenous feeding at home because no UK care companies have been signed off to do it. So I’ve got to sit here and watch her decline.’
Evie’s condition means she can only tolerate small amounts of soft oral food and is unable to get enough nutrition to sustain her without causing severe vomiting, fluid loss, bowel impaction or risking internal bleeds.
The showjumper, whose health has been deteriorating for the past three years, was set to undergo stoma surgery on March 31 in an effort to ease her symptoms but this has since been postponed due to the outbreak.
Ms Toombes told the Horse and Hound: ‘Her surgery has been postponed due to Covid-19 but unfortunately her weight is now so low we are unsure if she can survive at home much longer.’
As the coronavirus pandemic continues, Evie’s mother has seen her daughter’s weight continue to plummet to a BMI of 12.7 – anything below 18.5 is considered underweight.
Ms Toombes added: ‘I want to save my daughter. I don’t want to beg for care and justify the care she needs while she’s declining in front of my eyes. I just pray we have long enough to save her.’
Evie’s mother criticised Health Secretary Matt Hancock for claiming the NHS can offer care to everyone and said chronically ill patients like her daughter were ‘starving at home’.
She continued: ‘Why is Health Secretary Matt Hancock stating that the NHS ”has got the capacity to offer the very best of care to everyone”, yet chronically ill patients are starving to death at home after suddenly being discharged in March with no access to intravenous nutrition?’
Evie’s (pictured on March 17) rare form of spina bifida means she can only tolerate small amounts of soft oral food and must have intravenous feeds
Ms Toombes questioned why the Health Secretary Matt Hancock stated that the NHS had ‘the capacity to offer the very best of care to everyone’ when her daughter’s health was declining
She added: ‘Evie can only tolerate small amounts of soft oral food and a very limited amount of feed via a nasal tube into her jejunum – this is past the stomach and deep in the intestine.
‘Evie was due to have ileostomy stoma surgery on March 31 to help ease these symptoms and improve her condition as she has been deteriorating over the past three years and losing weight.
‘Her surgery has been postponed due to Covid-19 but unfortunately her weight is now so low we are unsure if she can survive at home much longer.
‘In October 2019, Evie was admitted to the Queen’s Medical Centre in Nottingham to receive parenteral nutrition delivered directly into her veins, instead of the digestive tract and this was highly successful for the short period it was done and secured a weight gain of 5kgs.
‘This meant Evie was stable enough to be discharged from hospital whilst plans were arranged for the ileostomy surgery that would improve her overall health.’
But the mother added that in lockdown, Evie has now reached her lowest weight and is needing emergency infusions of potassium multiples times a week at Pilgrim Hospital in Boston to keep her fluids up and keep her alive.
She said: ‘The Government guidelines for NHS plans so far have been sufficient for supplying and saving resources to help Covid patients.
Evie’s mother has been taking to social media to urge the government to take action as her daughter’s health declines
‘We anticipated that the Government would prioritise saving lives and begin reintroducing cancer treatments and procedures first, before then addressing urgent cases like Evie’s in due course.
‘Following the announcement to reintroduce fertility treatment first, our worry is that they are not prioritising saving existing lives. This has left us feeling invisible and perhaps last in the queue.
‘Evie is at risk of becoming collateral damage to Covid-19 and our hope is to highlight that there are still existing lives that need saving, before addressing the unborn.’
What is spina bifida?
Spina bifida is a fault in the development of the spine and spinal cord that leaves a gap in the spine.
About 1,500 babies are born with spina bifida each year in the US, according to the CDC. In the UK, approximately 1 in 1,000 babies are born with the condition.
Most cases are detected before birth, at the 20-week scan.
The most serious form of the disease is called myelomeningocele. In myelomeningocele, the spinal column remains open along the bones making up the spine.
The membranes and spinal cord push out to create a sac in the baby’s back.
This sometimes leaves the nervous system vulnerable to infections that may be fatal.
In most cases surgery is carried out to close the gap in the spine after birth.
But damage to the nervous system will usually already have taken place, resulting in:
- partial or total paralysis of the lower limbs
- bowel and urinary incontinence
- loss of skin sensation
Most babies with myelomeningocele will also develop hydrocephalus, with excess cerebrospinal fluid (CSF) pooling inside the brain.
This is caused by a malformation at the base of the skull in which the lower parts of the brain are pushed down towards the spinal cord.
Babies with hydrocephalus are fitted with a shunt after birth to divert the fluid from the brain, so reducing the risk of increasing cranial pressure, into the abdominal cavity.
She added: ‘The inability to discharge patients into the community on intravenous feeding puts Evie in an impossible predicament.
‘We need to explore a safe way to deliver nutrition and avoid a critical situation.’
Boston and Skegness MP Matt Warman has taken up the case and contacted the QMC.
He said: ‘The alternative is for a hospital admission for intravenous feeding, but because Evie is in the very highest risk group of getting coronavirus and getting this infection would be very dangerous for her, this is not the preferred option.
‘Any admission for IV feeding would be indefinite, because the hospital are unable to discharge anyone into the community on this treatment because of the coronavirus (homecare companies are not accepting any new referrals anywhere in the UK).
‘The least disadvantageous option at the moment is for Evie to remain self-isolated at home, and doing her best with her eating and nasal feeding, rather than run the very significant risk of coming into hospital.
‘The team have advised they will be continuing to monitor Evie closely.’
Dr Keith Girling, medical director at Nottingham University Hospitals said: ‘Evie needs a major operation that might help improve her nutritional status and the quality of her life, and we are sorry that we have been unable to do this operation earlier this year as planned.
‘However, Evie has been seen at her local hospital each week over the last couple of months, who have not expressed concerns about a significant change in her condition.
‘Before carrying out any surgery we need to be confident that we can provide safe theatre, critical care and ward care for our patients.
‘This is no different for Evie, and has been challenging given the coronavirus pandemic that we have been managing.
‘We are now beginning planning, within national guidance, to ensure all patients who have been waiting for their planned operation or appointment, including those who are particularly vulnerable from coronavirus infections, can confidently be treated in a safe way.’
A petition to help generate awareness of Evie’s situation and the many like her has now gathered more than 4,000 signatures on Change.org.
Forgotten victims of the corona pandemic: From a 7-year-old girl battling seizures to father-of-three who needs cancer surgery, the patients in limbo after their NHS treatment was put on potentially tragic hold
By Sue Reid for the Daily Mail
They are the forgotten victims of the corona pandemic — patients caught up in a devastating NHS crisis which is costing thousands of lives.
From a seven-year-old girl battling with seizures to a father-of-three who needs cancer surgery, every one of them has had their treatment put on hold while the NHS diverts resources to fight the virus.
And many of them believe it could result in their death.
Last Saturday, the Mail revealed the true scale of this emerging national tragedy.
Two million operations have been cancelled and an estimated 2,700 cancers a week left undiagnosed.
Lyla O’Donovan, 7, has a brain tumour and is ‘heartbroken’ the surgery she should have had last month is on hold because of the danger of catching Covid-19
In what doctors call the ‘collateral damage’ of Covid-19, nearly 1,800 extra deaths were recorded by the Office of National Statistics in one week last month, the highest number for nearly 20 years.
The Government wants hospitals to treat people in crucial need of medical help. But, because of the virus, operating theatres have been mothballed and wards closed.
For those who wait, the dreadful truth is that help may come too late.
Lyla O’Donovan, 7
Lyla has a brain tumour and is ‘heartbroken’ the surgery she should have had last month is on hold because of the danger of catching Covid-19.
The operation is to relieve pressure on her brain and stop her having seizures.
Her father, Paul, 35, a soldier from Co. Durham, says: ‘For every seizure she has, we don’t know the extent of the brain damage it’s doing.’
Reginald Waite, 82
The pensioner from Eaton, Cheshire, was diagnosed with cancer in March after a scan picked up a blockage in his bile duct, but has had a planned operation postponed.
Reginald, a retired electronics engineer, is worried his cancer will spread. ‘When are the hospitals going to treat people such as cancer patients and not just concentrate on Covid-19?’ he asks.
Reginald Waite, 82, from Eaton, Cheshire, was diagnosed with cancer in March after a scan picked up a blockage in his bile duct, but has had a planned operation postpone
Amelia Jones, 17
Amelia is missing the top of her skull because of emergency surgery after collapsing with a brain haemorrhage on January 3.
The craniotomy procedure was necessary to relieve pressure on her brain, but it has left Amelia with movement and cognitive difficulties.
Her prognosis is poor unless she has a further operation to replace part of her skull, a procedure called cranioplasty, which has been put on hold.
Her father Leighton, who is director of rugby at Marlow Rugby Club, says: ‘Amelia has a long way to go, but without this operation she can’t start.’
Amelia Jones, 17, is missing the top of her skull because of emergency surgery after collapsing with a brain haemorrhage on January 3
Kieran Crighton, 14
The wheelchair-bound teenager needs two operations — one on his leg to help him walk and another to drain fluid from his brain, but both are on hold.
Kieran, from North Ayrshire, has autism and was diagnosed with five brain tumours two years ago.
His mother, Senga, says: ‘I am very anxious for Keiran.’
Kieran Crighton, 14, needs two operations — one on his leg to help him walk and another to drain fluid from his brain, but both are on hold
Ceri Maddock Jones, 39
Mother-of-two Ceri was diagnosed with inoperable pancreatic cancer five years ago. Before the virus struck, she’d hoped to go on a med- ical trial.
‘The trials are the only option for me. Everything else has been exhausted,’ says Ceri, who lives in Ewell, Surrey, with husband Garry and their sons, Austin, six, and Leo, five.
‘I don’t want to die, for my sons’ sake. These trials were my last hope of keeping my family together a bit longer.’
Mother-of-two Ceri Maddock Jones, 39, was diagnosed with inoperable pancreatic cancer five years age
Roland Monger, 39
Roland may have only months to live after his chemotherapy for the skin cancer he has been battling for four years was put on hold.
The university admissions manager from Torpoint, Cornwall, says: ‘It is my 40th in July.
I am aiming to make that. Maybe I will see the kids back to school in September.’
Roland Monger, 39, may have only months to live after his chemotherapy for the skin cancer he has been battling for four years was put on hold
Laura Beattie, 31
The fashion business owner, from Manchester needs a lung transplant after cystic fibrosis ravaged her own organs.
Laura has been on the transplant list for two years, but in March she got a letter saying her next test appointment had been ‘pushed back’ until August ‘because of coronavirus’.
Laura Beattie, 31, pictured left with sister Rachel, needs a lung transplant after cystic fibrosis ravaged her own organs
The risk of her getting an infection at the hospital filled with Covid patients is believed to have been the reason.
‘I am having monthly appointments over the phone, but the doctors can’t measure my lung function properly,’ she says.
Which means, crucially, they can’t assess whether it is declining because of the disease.
Chris Romney, 64, from Derbyshire, has advanced prostate cancer
Chris Romney, 64
The grandfather from Derbyshire has advanced prostate cancer and has had his surgery at Royal Derby Hospital postponed after facilities were given over to coronavirus patients.
Chris, a retired RAF fighter controller and Nato executive, now fears his life is on the line.
He said: ‘Cancer patients have been side-lined. Those like me who need urgent surgery face an increased risk of the cancer spreading, potentially fatally.’
Chris, who lives with his wife, Laura, says the hospital has told him opening up facilities to non-Covid patients will be a ‘long, complicated’ process.
Rob Martinez, 63
Rob, from Berkshire, suffers from osteoarthritis which is so severe he struggles to climb up and down stairs.
He needs both knee joints replaced, and was forced to take early retirement because of his pain.
Last year, he was given a date for his first knee replacement: April 15, at Frimley Park Hospital in Surrey. Rob was overjoyed.
Rob Martinez, 63, from Berkshire, suffers from osteoarthritis which is so severe he struggles to climb up and down stairs
But then he got a call to say all operations had been cancelled for the next three months — starting from the day of his surgery.
‘There’s going to be such a backlog after all this I dread to think what’s going to happen,’ he said. ‘There’s a worry that something like a knee replacement will be forgotten.’
Andy Gower, 53
The businessman from Milton Keynes has only the slimmest chance of surviving his colon cancer if his operation is delayed.
He was due to have surgery this month, but it was cancelled when his hospital was turned over to Covid-19 patients.
Andy Gower, 53, from Milton Keynes, has only the slimmest chance of surviving his colon cancer if his operation is delayed
Now Andy, a father of three, has been told it may be seven weeks before he can have an operation on his stage-three cancer.
He says: ‘If I get the operation soon, I have a 75 per cent survival rate, which is quite good.
‘But if it has spread to stage four beforehand, then my chances go down to ten per cent.’
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