‘DOCTORS TOLD ME I’D MISCARRIED’
WHEN Emily Wheatley was nine weeks pregnant, she was given the devastating news that she had suffered a miscarriage.
But just before she was set to undergo a procedure to remove the foetus, doctors discovered that the unborn baby was, in fact, alive and perfectly healthy.
Five years on from the catastrophic blunder, the 35-year-old mother said the NHS is “failing” her all over again by not offering her daughter the support she needs to lead a normal life.
“They took away the enjoyment of pregnancy for me which is something any woman looks forward to,” said Emily, recalling the ordeal.
“You want to be excited about it – but I didn’t have any of that because I was too worried to get involved in the pregnancy in case it didn’t work out.”
Emily, who has polycystic ovary syndrome and endometriosis, said it came as quite a shock when she found out she was pregnant in 2012.
“I was severely dehydrated during the pregnancy. My consultant said it was the worst case he’d ever seen,” said Emily, who was diagnosed with hyperemesis gravidarum – an extreme morning sickness which also affected the Duchess of Cambridge.
“I was sick all the time and I needed to be admitted to hospital 18 times.” At a routine dating scan, sonographers at the University Hospital of Wales (UHW) in Cardiff, told Emily that she had experienced a “silent miscarriage” where there are no obvious symptoms.
Instead of opting to take medication to remove the foetus, the former Cardiff resident decided to head back to her family home in Monmouth and have a uterine evacuation at Nevill Hall Hospital, Abergavenny.
Following an internal scan, which is more thorough than tests the sonographers had carried out at UHW, it was discovered the unborn baby’s heart was beating normally.
“It was so emotionally overwhelming,” she added. “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 that the sonographers had made an “unacceptable mistake” which should have been avoided, and called a review of midwife sonographers’ competency.
A spokesperson for Cardiff and Vale University Health Board said: “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.”
On February 11, 2013, Emily gave birth to daughter Ella at Nevill Hall Hospital weighing 5lb 6oz.
While Ella passed all the initial diagnostic tests and was discharged without any major concerns, at the age of seven weeks she suddenly stopped breathing.
“She just went floppy in my arms when we were at home,” she added.
“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.”
Emily, who lives in Monmouth, claims doctors at Nevill Hall recorded Ella’s glucose levels as low and sent her home following an assessment.
But at five months old Ella had a similar episode in front of staff in A&E and stopped breathing again.
She was given a lumbar puncture in which her spinal fluid was recorded as considerably lower than normal.
“Other than that, they said there were no signs of anything being wrong; no rash, no temperature and she was eating,” Emily added.
“But if they had carried out a blood test at five months it would have been able to detect any genetic mutations or anomalies.”
In October 2017, five-year-old Ella was finally given a genetic test which diagnosed her with a rare condition known as glucose transporter deficiency syndrome (Glut1).
In addition to her breathing problems, Ella has also suffered with seizures, learning difficulties and is now on a special diet which needs to be followed rigidly.
“Essentially, Ella doesn’t get any glucose to her brain which leads to her cognitive abilities being impaired,” Emily said.
“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.”
Unlike diabetes patients, Emily says Wales does not provide any dietary support for people with Glut1 and has called for the Welsh Government to create a designated ketogenic team.
She says the Daily Garland Foundation, a registered charity for people with epilepsy, is willing to fund a dietician in Wales specifically for Glut1 patients for 12 months.
Emily spoke in front of Assembly Members yesterday about the lack of awareness and support around the condition.
“Ella is an amazing girl, and despite everything she’s been through is always smiling – and that motivates me to make a difference.
“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 Glut1, 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.”
And in response to Emily’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.”