A mum says doctors misdiagnosed her newborn child for five months despite her “screaming in pain all day and all night”.
Morgan Austin, who lives in Teynham, told KentOnline how it took her having a “breakdown” in an A&E ward to find out her daughter has a life-changing condition.
The 27-year-old gave birth to Matilda four weeks prematurely on January 13 at Medway Maritime Hospital. But despite her labour going smoothly, the baby’s health began to deteriorate.
Firstly, she suffered from jaundice – a common and usually harmless condition which causes a yellowing of the skin – but this abated within a week.
However, during this time, the newborn was having issues with feeding, was continuously arching her back in a “banana pose”, and “screaming in pain all day and all night,” Morgan says.
The 27-year-old took Matilda to her GP as well as doctors at Medway and William Harvey Hospital in Ashford, but the symptoms were put down to “severe reflux”.
The DPD delivery administrator, who is married to Sheerness Docks electrician Jed Austin, was given medication for this reflux.
But this did not ease the symptoms. Then, on May 1, Morgan took her baby back to William Harvey Hospital’s A&E ward and demanded a proper examination.
She told KentOnline: “I tried lots of different medications and nothing seemed to work.
“I remember in one week I went to the hospital three times to get her seen.
“Each time I was told that I’m a first-time mum and this is normal. But I knew it wasn’t.
“It took me having a breakdown, crying and saying I can’t cope anymore to get her examined physically for the first time.
“The doctor said her reflexes weren’t as developed as they would expect them to have been.
“She also said she was very stiff and the arch was abnormal, and while it is a symptom of reflux, it could be something else going on neurologically.”
The hospital carried out an MRI scan, which found that Matilda had previously had a bleed on her brain.
Both mother and baby were blue-lighted to the Evelina Children’s Hospital in London, where over the next two weeks, more tests were done, including another MRI and ultrasound.
While the specialists found there had been a bleed, they were unable to say when this had taken place.
They found Matilida had dystonia, which causes uncontrolled and sometimes painful muscle movements, white matter damage and later in July she was diagnosed with cerebral palsy.
Morgan says she was “shocked” to hear that her baby, who was born without a hitch, will now face major problems with her motor skills as she grows up.
She said: “Obviously, no one wants to be in this boat, and you never expect this to happen to you.
“My heart goes out to anyone going through a similar thing to me.
“Being a parent is hard as it is, but then having a child with a disability and really sort of complex needs is really, really difficult – not knowing what their future’s going to hold.
“You want the best for your child and would pay anything, do anything, but it’s being able to access those resources and finding the money.”
While the NHS is providing care for Matilda, Morgan says that the support the family is receiving simply is not enough.
The eight-month-old baby was last seen by a doctor in June, and her next appointment is in September.
She explained: “I was told that physiotherapy is key, especially the first two years of life, and the neuroplasticity is so important for a baby.
“The NHS offers what it can, but it isn’t enough. I haven’t seen the doctors for months.
“Matilda needs intensive therapy as much as possible to make the brain have new connections on how to use her arms and legs, and I’m very motivated.
“When I did see the specialist at Evelina, he said it’s very unlikely she’ll be able to walk, but if anything, it’s just motivated me more to prove these doctors wrong.
“So we do take her once a week to a private physiotherapist, and then I do everything they teach me at home to give her the best chance of being able to build muscles and walk when she is older.
“But the cost of that is just too much, especially with me being on maternity leave still and us still having bills to pay and our mortgage.”
The extra private sessions cost up to £120 an hour – an expense the young family is struggling to cope with – so they are asking for help to pay for the care and have set up a fundraising page.
You can view it by clicking here.
Morgan said: “One thing I have learned from this is there are really kind people out there that care.
“The amount of support I’ve received so far has just been outstanding.
“Already I’ve been able to pay for 10 sessions of physiotherapy, which costs over £1,100, so that’s just amazing.
“I know times are tough, so if you can’t give any money, just sharing her link to the campaign would help massively.”
As well as the fundraising page, the family is hosting an event at Sittingbourne Golf Club in Church Road, Tonge, on October 11.
Between midday and 7pm there will be live music, a raffle, stalls and a Boogie Tots dance class.
The NHS trusts in charge of Medway and Ashford hospitals were approached for comment.
