'I'm watching my daughter starve to death because she can’t get hospital treatment': Heartbroken mother fears her 18-year-old who is tube fed won't survive after crucial surgery was cancelled due to COVID-19

A mother has revealed how she is 'praying there is long enough to save' her teenage daughter after a lifesaving surgery in March was cancelled amid the coronavirus pandemic.

Evie Toombes, 18, from Skegness, was born with spina bfida and suffers from a chronic gastrointestinal condition called gastropersis, which means she can't keep food down.

Since her March surgery was cancelled, the teenager's health has dramatically declined, with her BMI dropping dangerously low to 12.7 and emergency infusions of potassium at a local hospital required to keep her alive. 

Her mother Caroline now fears her life is in danger if she doesn't receive urgent medical attention, saying: '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.'  

+11

Evie Toombes, 18, from Skegness, was born with spina bfida and suffers from a chronic gastrointestinal condition called gastropersis, which means she can't keep food down. She had a critical surgery cancelled in March due to the coronavirus pandemic, and her BMI has now dropped to 12.7

+11

Her mother Caroline is terrified for her daughter's life, who is now too weak to get out of bed (pictured together) 

Evie was born with a form of Spina Bifida, which affects the nerves to her legs, bladder and bowel, but her passion for horse-riding gave her a purpose in life. 

Her gastro-intestinal problems started three years ago, when she began vomiting whenever she ate and was diagnosed with gastroparesis, a condition that affects the normal spontaneous movement of the muscles in the stomach.

'She would try to eat small amounts more often to compensate, up to 30 times a day sometimes, but she became very sick and in the end, she had to have an NG tube put in through her nose to her stomach so she could be fed that way,' Caroline explained.

'But because she was always being sick the tube kept coming out, so the doctors tried putting in an NJ tube which goes further down past the stomach.'

+11

Evie's BMI has now dropped to 12.7 and she has very little energy, with her mother saying she is almost unable to get out of bed 

+11

The 18-year-old was born with a form of Spina Bifida, which affects the nerves to her legs, bladder and bowel, but her passion for horse-riding gave her a purpose in life 

Even then, Evie could only tolerate tiny amounts of soft, low-fat food which wasn't enough to sustain her.

In October 2019, she was admitted to the Queen's Medical Centre in Nottingham to receive parenteral nutrition delivered directly into her veins, instead of her digestive tract. 

This method worked for a short time and the teenager managed to gain half a stone in weight.

It meant she was well enough to be discharged from hospital whilst plans were put in place for her to undergo ileostomy surgery – a procedure where the small bowel is diverted through an opening in the abdomen called a stoma, so waste that usually passes through the colon can be collected in a special bag attached to it. 

+11

Caroline fears that if her daughter goes much longer without proper treatment, she might not survive (pictured together) 

+11

Evie was due to have an operation on March 31 to ease her symptoms and improve her condition (pictured, with her mother Caroline) 

+11

The para showjumping teenager has a passion for horses which helps to motivate her (pictured, Evie riding) 

Evie was due to have the operation on March 31 this year, which was expected to dramatically ease her symptoms and improve her condition. But the procedure had to be cancelled due to Coronavirus.

The horse-loving para showjumper would also normally be given intravenous treatment in hospital to ensure her body gets the nutrients it needs but the risks posed to her by the current pandemic means it is too risky. 

The safest and preferred option would be for her to have the intravenous fluids administered at home, but with care companies not taking any new referrals, this isn't possible either. 

And Caroline fears that if her daughter goes much longer without proper treatment, she might not survive. 

+11

Caroline is desperate to get her daughter the help she needs and says the Government must start taking better steps to ensure people can still get urgent medical care (pictured together)

+11

The 18-year-old is now painfully thin and with a dangerously low BMI, her mother is terrified she won't survive to receieve necessary medical treatment

She is painfully thin and with a dangerously low BMI,  is now barely able to get out of bed because she is so weak.   

Caroline is desperate to get her daughter the help she needs and says the Government must start taking better steps to ensure people can still get urgent medical care.

'I have just listened to a speech by Matt Hancock saying that the NHS are providing the very best care for everybody that needs it. Well I'm sorry, but my daughter is starving,' Caroline said. 

+11

Caroline fears her daughter is now starving to death and is unable to go in for intravenous feeding due to the coronavirus pandemic 

'She has a BMI of 12.7 but can't go in for intravenous feeding because there is Covid-19 on the ward.

'She can't have intravenous feeding at home either because no UK care companies have been signed off to do it, so I have got to sit here and watch her decline. 

'She can only tolerate small feeds through her nasal tube and also has to have bowel treatments every night, which takes hours,' explained Caroline. 

+11

Evie is currently requiring  emergency infusions of potassium at a local hospital to keep her alive but her mother fears she will become more unwell as the lockdown continues 

'But if we don't unblock her bowels, nothing will move through them and she will become very sick.' 

Angered by the Health Secretary's promise that the NHS would offer urgent care to all who need it during the Coronavirus pandemic, she added: '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 care is complex and she's very high risk - she can't just go to any ward or hospital. 

'Talks are in progress to move things forward but it's imperative for Evie that it's safe to do so.

'The Government and Trusts must be honest about the difficulties faced by wards trying to keep patients safe, as without honesty there can be no solution. Matt Hancock's statement is not the reality.'

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.

He added that before carrying out any surgery the medical team needed to 'be confident that we can provide safe theatre, critical care and ward care for our patients' and that this was no different for Evie. 

Dr Girling added: '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.'

Boston and Skegness MP Matt Warman has contacted the hospital trust on behalf of Evie to see if anything can be done. He said: '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.'

Evie tweeted about her dilemma on her Twitter page, saying: 'The NHS are now reintroducing fertility treatment…but WHY are they prioritising 'changing the lives of many couples' instead of saving EXISTING lives first? I feel like I'm stuck in a glass box screaming for help. I don't know how much longer, or if I will be safe at all now.'