Mother battles against the NHS after her 5-year-old daughter, who she was once told to abort, is denied treatment
- At nine weeks pregnant, Emily Wheatley was told she had a silent miscarriage
- After seeking a second opinion, her daughter Ella was born in February 2013
- At seven weeks, Ella stopped breathing, with doctors dismissing her symptoms
- The youngster was finally diagnosed with a rare condition in October 2017
- Ella’s only treatment option is a strict diet; she receives no Government support
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A woman who who was told to abort her ‘lifeless’ baby is once again fighting for her miracle daughter.
At nine weeks pregnant, Emily Wheatley, now 35, was told her unborn baby had died in a silent miscarriage and was encouraged by doctors to terminate the pregnancy.
After seeking a second opinion, Ms Wheatley, from Monmouthshire, Wales, discovered her baby’s heart was beating normally, with her miracle daughter Ella being born in February 2013.
Although at first everything seemed fine, Ella suddenly went floppy and stopped breathing at seven weeks old, with doctors dismissing her symptoms as nothing serious.
After years of seizures and episodes of being unable to breathe, the youngster was finally diagnosed with the rare condition glucose transporter deficiency syndrome in October 2017, which causes her to get no glucose to her brain.
Ella, whose only treatment option is to follow a strict low-carb, high-fat keto eating plan, does not get any dietary support from the Welsh Government, unlike diabetes patients.
Ms Wheatley is speaking out to encourage the Government to create a specific ketogenic-diet team.
Emily Wheatley is once again fighting for her daughter Ella after she was told to abort her
Ella suffers from a rare condition that means no glucose reaches her brain
Ella is frequently in hospital after suffering seizures and episodes where she cannot breathe
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WHAT IS GLUCOSE TRANSPORTER DEFICIENCY SYNDROME?
Glucose transporter (Glut1) deficiency syndrome is a rare condition that affects the brain’s metabolism.
Glut1 is a protein that transports glucose from the blood to the brain for fuel.
A shortage of glucose leads to reduced brain function and growth.
The condition is caused by a genetic mutation.
Most sufferers start having seizures within the first few months of life.
They may also experience reduced balance and co-ordination, as well as abnormal limb and eye movements.
Epilepsy medication rarely works to control such patients’ seizures.
A ketogenic diet, which is low in carbohydrates and high in fat, can cause the body to make ketones as an alternative fuel to glucose.
Source: Epilepsy UK
‘She just went floppy in my arms’
Five years on from the pregnancy scan blunder, Ms Wheatley claims the NHS is ‘failing’ her again by not offering her daughter the support she needs to lead a normal life.
Ella was born healthy on February 11, 2013, weighing 5lb 6oz, however, less than two months later, her health took a turn for the worst.
Ms Wheatley said: ‘She just went floppy in my arms when we were at home.
‘It was horrific. I had a bit of a meltdown. I couldn’t cope with it all so I gave her to my mum who performed mouth-to-mouth.’
Ms Wheatley claims doctors at Nevill Hall recorded Ella’s glucose levels as low but sent her home regardless.
At five months old, Ella stopped breathing again and was given a test that revealed her spinal-fluid levels were considerably lower than normal.
Ms Wheatley said: ‘Other than that, they said there were no signs of anything being wrong; no rash, no temperature and she was eating.
‘But if they had carried out a blood test at five months it would have been able to detect any genetic mutations or anomalies.’
‘The only form of treatment is giving her a ketogenic diet’
In October 2017, five-year-old Ella, who suffers from learning difficulties, was finally diagnosed with glucose transporter deficiency syndrome after having a genetic test.
Ms Wheatley said: ‘Essentially, Ella doesn’t get any glucose to her brain which leads to her cognitive abilities being impaired.
‘The only form of treatment is giving her a ketogenic diet which is high in fat, low in carbs and low in protein.
‘I have to cook everything from scratch for her and I have to be incredibly precise in the amount of grams I give her.
‘It has worked wonders for Ella. She is much more alert.’
The only possible treatment for Ella is a strict keto diet where everything is controlled
Unlike diabetics, the youngster receives no dietary support from the Welsh Government
WHAT IS THE KETO DIET?
The Ketogenic diet defines a low-carb, high-fat way of eating.
Following this eating plan forces the body into a metabolic state, known as ketosis, which starves the body of carbohydrates but not calories.
Carbs are shunned in the keto diet as they cause the body to produce glucose, which is used as energy over fat.
Keto diets therefore lead to weight loss as they make the body burn fat as its primary energy source.
On the diet, followers can eat:
- Meat
- Leafy greens and most vegetables
- Full-fat dairy
- Nuts and seeds
- Avocadoes and berries
- Fats, such as coconut oil
People cannot eat:
- Grains, including rice and wheat
- Sugar, like honey and maple syrup
- Most fruit
- White or sweet potatoes
‘Ella is an amazing girl’
Ms Wheatley spoke in front of Assembly Members on Tuesday about the lack of awareness and support around her daughter’s condition to encourage more Government support.
She said: ‘Ella is an amazing girl and despite everything she’s been through is always smiling and that motivates me to make a difference. I am grateful she’s here.
‘There are hundreds of women who can not have children or go through the turmoil of a miscarriage and I am blessed to have my daughter with me’.
In response to the delays in diagnosing Ella with glucose transporter deficiency syndrome, a spokeswoman for Aneuin Bevan University Health Board said: ‘We are sorry to hear that Emily has concerns about the care Ella has received.
‘We would ask that Emily makes contact with us directly so we can look into this further.’
In response to Ms Wheatley’s call for better dietary support, a Welsh Government spokesman said: ‘Currently services for patients in South Wales who require access to support for a ketogenic diet are provided in Bristol.
‘Discussions are taking place about the possibility of these services being provided more locally.’
‘It was so emotionally overwhelming’
Ms Wheatley, who never expected to become pregnant after suffering from polycystic ovary syndrome and endometriosis, was told she had a silent miscarriage during a routine scan at the University Hospital of Wales in Cardiff.
Rather than opting for medication to end her pregnancy, Ms Wheatley had a second scan near her family home at Nevill Hall hospital in Abergavenny.
Speaking of hearing her baby’s heartbeat, she said: ‘It was so emotionally overwhelming.
‘My decision [to move hospitals] was purely down to luck and the fact my family lived elsewhere and weren’t in Cardiff to support me.’
A report by the Public Ombudsman for Wales, published in 2013, concluded the sonographers had made an ‘unacceptable mistake’ that should have been avoided and called a review of the midwives’ competency.
A spokesperson for Cardiff and Vale University Health Board said: ‘We are sorry for the anxiety and distress caused to Ms Wheatley.
‘The health board has apologised to Ms Wheatley and taken immediate steps to implement recommendations from the Royal College of Obstetricians and Gynaecologists guidance in respect of the diagnosis of early pregnancy loss.
‘A thorough investigation has taken place and our protocols and guidance documentation have been updated and circulated to staff.’
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