A woman is literally starving to death due and weighs just three stone to a rare condition that has left her unable to eat or drink anything.
Nicolette Baker weighs only 20kg – roughly 3.1 st – and is fighting to survive after a lifetime suffering with a rare syndrome that makes eating “excruciatingly painful” for her.
The 36-year-old from Cornwall suffers from Superior Mesenteric Arterial syndromes (SMAS).
However, despite suffering it from birth, she was misdiagnosed originally with “severe and enduring anorexia nervosa” for most of her life.
Because of this, she was sectioned on multiple occasions and received treatments that were both ineffective and “traumatic”, she said.
Now, after receiving palliative care at her home in Truro, Cornwall, she is hoping to travel to Germany to get life-saving treatment at the end of February.
Nicolette said: “I’m trying to keep the dream alive.
“I don’t know if I’ll make it until the surgery date but I’m living for each day and the hope that I can get better is giving me something to look forward to.”
She was diagnosed with SMAS seven years ago, but recalls as early as four restricting how much she ate to reduce the pain she felt when eating.
SMAS refers to a vascular compression in the small intestine that results in extreme pain when eating and drinking.
Foods and liquids become backed-up, stretching the stomach, causing vomiting and bacterial infections as the food rots.
The anticipated pain can cause sufferers to develop a fear of eating.
The syndrome is associated with starvation and one-third of those with the syndrome die from malnutrition.
Nicolette said: “If one can imagine that the average size of a small intestine as being a garden hose, a pinched drinking straw resembles that of an SMAS sufferer, it may be easier to appreciate how even fluids cannot pass through without immense pain and discomfort and how this can result in severe malnutrition and dehydration over time.
SMAS is extremely rare with an incidence rate of just 0.013% and, consequently, it is not well-known among medical professionals in the UK.
She added: “For 25 years, I was treated as a mental health patient with an eating disorder throughout childhood, early teens and into adulthood. I was sent to eating disorder units across the county for months sometimes to a year on end, forced to gain weight with punitive feeding regimes which my digestive system simply couldn’t manage.
“I felt completely humiliated and my identity stripped away during these decades of treatment not least because I simply couldn’t get it through to professionals that I could not stomach the food in me.
“I didn’t have anorexia because I wanted to be thin. I simply didn’t want to eat because of the pain it caused me,” Nicolette said.
When Nicolette spoke about the pain she was experiencing, she was told that it was due to her stomach being unfamiliar with food.
Eventually, she was admitted to general hospitals for months of forced feeding with a nasogastric tube.
However, due to the physical cause of Nicolette’s eating struggles, this made matters worse.
Nicolette said: “Had they known about my compression, they should never have force fed me like this because any nutrition would be emptied into my stomach above the compression in my intestines and caused me immense pain and bloating which was only ever attributed to me not being used to having food in my stomach.
“I’d begun to swell all around my back and the pain radiated towards my back too. The Gastro doctors again dismissed my pain saying I was just constipated.
“It’s been a never-ending story of being told I’m too complex,” Nicolette said
It was at this point that Nicolette changed to another consultant who, after a CT scan, diagnosed her with SMAS and immediately opted for a feeding tube that bypassed the compression site.
Despite this, the severity of Nicolette’s condition means that even this method of feeding became too difficult and the possibility for surgery in the UK was ruled out due to the risks of sedating someone in such critical health.
However, with the help of a Facebook SMAS support group, Nicolette has been in touch with an expert in vascular compressions in Germany who agreed to perform life saving surgery on her in February.
After some encouragement from friends and family, Nicolette has started a Go Fund Me page to help cover the costs of both the operation and travel.
Nicolette said: “The result of the surgery is not guaranteed but this is my last chance to reclaim my quality of life.”
She wrote on the page: “This surgery costs well over £50,000 and does not include my accommodation, my flights, travel and medical insurance, Covid tests and a medical chaperone accompanying me to surgery. I will need to spend six weeks in Germany and due to my severely emaciated state of health I will need to take taxis and rely on extra support for luggage and transportation.
“But from the bottom of my heart I want to thank you for reading this. Anything you can donate to this cause would be so gratefully received.”
A friend and advocate of Nicolette said: “When we go to the doctors, we assume that they will know what to do. It’s uncharted territory when they don’t.
“I think if medics can’t find something wrong, they can sometimes be quick to label someone or say it’s psychosomatic but that can be very damaging to the patient. It can really knock their confidence.
“Nicolette is very exhausted but she is tenacious, determined and strong. It’s outstanding considering her circumstances.
“This really is her last chance.”
Despite her misdiagnoses and feeling misunderstood by medical professionals, Nicolette says that she does not attribute any blame.
She said: “I don’t regret my experiences and I certainly do not resent my treatment. I have always maintained that the professionals treated me the best they knew how to at the time.
“What is within one’s best interests may be a matter of conflict, but if all are motivated to do the best then I can only be thankful for the compassion I received.
“Because I do believe that every single medic, GP- who have stood by me unconditionally when all else disintegrated around me- and every single professional, nurse, NHS worker, and incredible dieticians and psychotherapists and every care provider from whom I have had the privilege to receive treatment, offered it to me from a place of true compassion.
“I’m taking each moment for what it is now. And appreciating each breath the universe gives me.”