THE mum of a little girl who regularly stops breathing for “upwards of a minute” says her daughter’s urgent treatment has been postponed indefinitely.
Ashley Hughes, from Lancashire, spends every night wondering if three-year-old Sophie, “is going to be alive in the morning”.
Ashley Hughes says her daughter Sophie hasn’t been diagnosed or treated for breathing difficulties[/caption]
Ashley worries every night if Sophie “is going to be alive in the morning”.[/caption]
Sophie was diagnosed with sleep apnoea, but 38-year-old Ashley is concerned that there is something more serious at play with Sophie.
She is rendered breathless after even the slightest exertion and completely unable to perform physical tasks, such as jumping or climbing the stairs.
The mum-of-two has cited a list of alleged failures from both NHS-run Royal Preston Hospital and Royal Manchester Children’s Hospital which have left Sophie waiting months for an investigative appointment that should have been done in four weeks.
Until the cause is discovered, Sophie cannot start any treatment.
Ashley says hospitals are “passing the buck to one another” while her tot’s condition worsens, despite her being deemed as ‘clinically urgent’.
Ashley says: “She’s three and she can’t run or jump or climb stairs.
“She is now developmentally delayed. Her speech is now that of a 12-18-month-old. I can’t help but wonder if she has these problems because her body is being constantly starved of oxygen.
“It affects her entire life. She cannot do things a three-year-old should be able to do. She is working twice as hard to breathe as everyone else.”
Sleep apnoea causes breathing to stop for 10 seconds or more in sleep.
It raises the risk of serious health conditions such as stroke, heart attack and diabetes if left untreated.
Videos taken by Ashley show the youngster’s laboured breathing at night, as she sucks in her stomach and chest to catch a breath.
“She stops breathing for 45 seconds at a time, sometimes upwards of a minute,” said Ashley. “Then she will breathe for around 10 to 15 seconds. This repeats all night.
“There is the constant worry of ‘is my child going to be alive in the morning, is she breathing?’ It’s especially bad now her symptoms are getting worse.”
But as Ashley says Sophie’s breathing is now affected in the day, “her oxygen levels get dangerously low” .
“Her oxygen drops in the day and she gets so out of breath, she is permanently lethargic and just lays down,” says Ashley.
“There is a constant fight for medical care. Oxygen is a basic need and it’s been rejected so many times or ignored.
“No parent should have to fight this hard and I don’t want Sophie to be another statistic or another ‘we should have done better’. They need to do better now.
“We were in A&E four times last week with her struggling to breathe. And everytime we were batted from pillar to post. We were told she needs to see a specialist – but she already is.”
Sophie’s symptoms started from birth, presenting as constant congestion which Ashley says was chalked up to her being a ‘stuffy baby’.
Ashley and her partner, Sophie’s dad, Adam, took their five-month-old baby to hospital when they noticed she had a “sunken chest”.
Videos taken by Ashley show that Sophie stops breathing for long periods in her sleep, a condition known as sleep apnoea[/caption]
Ashley, pitured with her kids, says she does not want Sophie to be “another statistic”[/caption]
Ashley said: “An ambulance was sent for her. I noticed it while I was getting her undressed. Her oxygen was really low and her chest was caved in.”
Despite her concerns, Ashley said the couple were ‘horrified’ when they were reportedly told that Sophie would ‘grow out of it’ by the time she was four or five.
The family were discharged just hours later with a diagnosis of a viral infection.
“I said ‘it’s not possible my child can have a virus every single day of her life’,” Ashley added.
When the problems worsened and began to affect other aspects of Sophie’s life, the family returned for help, eventually being referred for a sleep study at Royal Preston Hospital in September last year.
Ashley recalls: “The alarms were going off all night. Her oxygen levels were down to 72 per cent. And now, she’s the worst she’s ever been.
“I’d say she’s 50 per cent worse now than she even was back in September.”
How to tell if your baby is struggling to breathe
Ex-paramedic Nikki Jurcutz, who’s behind the baby and child first aid Instagram page Tiny Hearts Education, shared four key signs that indicate your little one is struggling to breathe.
Retractions, she said in an Instagram post, are a telltale sign that your baby is in respiratory distress and could be having difficulty drawing enough air into their lungs, making their body work harder.
If you’re seeing a sucking motion under your tot’s ribs or the base of their throat, it means their body is trying to help by using extra muscles to pull more air in, Nikki said.
Their breathing will also sound different too, as your baby might be making a grunting or wheezing sound.
There are four different kind of retractions to keep your eyes peeled for, and four different spots on your little one’s body to keep an eye on.
They include:
- tracheal retractions – a tugging at the base of their throat
- intercostal retractions – tugging between ribs
- substernal retractions – tugging just bellow the centre of your little one’s chest
- subcostal retractions – tugging at the bottom of the ribs
Tugging means you’ll basically be able to see a sucking motion with each of your little one’s breaths, as if their body is caving inwards in these specific spots.
Nikki suggested taking a 30-second video of your little one breathing normally when they are healthy and well, in order to have a point of comparison in case you think your child has laboured breathing.
WAIT TIME LIMBO
The concerned mum said that Sophie was also sent for an MRI through Royal Preston Hospital, which she was told was ‘normal’, however, she later found out that the results were abnormal and she had been misinformed.
Sophie was referred to Royal Manchester Children’s Hospital for an Ear, Nose and Throat (ENT) investigation.
Here, Sophie’s fraught parents were told in December that her case was ‘clinically urgent’.
They were told she would undergo an adenotonsillectomy and a full airway endoscopy to find the cause of the issue within a month.
More than 15 weeks later they are still waiting.
In an email from Royal Manchester Children’s Hospital, Ashley and Adam were told that the waiting time is ‘significantly more’ than what they had been led to believe.
My daughter is suffering daily due to systemic failures in the NHS and I demand intervention before her condition worsens further.
Ashley
The letter says: “I can see that your child has been on our waiting list for 15 weeks and has a P2 case, which is classed as clinically urgent.
“Unfortunately the waiting time is significantly more than one month contrary to what the consultant may have told you.
“We do not currently have a surgery date for her however, if her symptoms are getting worse it may be worth speaking to your GP to expedite the case.
“I cannot accurately state where your child is on the waiting list as there are new cases inputted throughout the day which includes emergency surgery and very urgent cases therefore the waiting time changes.”
According to the NHS’ own documentation, P2 is the second most urgent category for surgical patients, with P1 being the most critical and P6 being the least. In P2 cases, guidelines state that patients should be treated in less than a month.
As well as this, Royal Preston referred Sophie to the respiratory department at Manchester Royal Children’s Hospital in October to check if anything is blocking her airways – but Ashley discovered in late February that no such referral has ever been received.
In a desperate bid to expedite their daughter’s case, Ashley has contacted her MP Sir Lindsay Hoyle as well as Health Secretary Wes Streeting and NHS England asking for immediate action to be taken.
“This continuous negligence and lack of action are unacceptable,” she said.
“My daughter is suffering daily due to systemic failures in the NHS and I demand intervention before her condition worsens further.
“If I do not receive a satisfactory response I will be escalating this matter further, including taking legal action if necessary.
“They keep passing the buck to one another while she suffers.”
Becoming increasingly frustrated with the lack of investigation, Ashley submitted a complaint to Lancashire Teaching Hospitals NHS Foundation Trust (LTHTR), which runs Royal Preston Hospital, in November but says she was ‘disappointed’ with the lack of any action.
She has since submitted another complaint.
A spokesperson for the trust said: “We would encourage any patient who is unhappy with the care that they or their loved one has received to get in touch with our Patients Advice and Liaison Service as soon as possible and they will ensure that the issues raised are investigated and a response provided.”
A spokesperson for Manchester University NHS Foundation Trust, which runs Royal Manchester Children’s Hospital, said: “Patients are always seen based on clinical priority and we understand some families will be waiting longer for appointments due to continued pressures faced by the NHS.
“Our clinical teams are working hard to see all patients and will be in touch with Sophie’s family to discuss her treatment and we are sorry for any distress caused at this time.”
