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Nine-month-old Soraya Owen-Brown spent ten hours in theater on Wednesday (26/2) as surgeons removed 90 per cent of the tumor, which was not spotted by doctors for more than two months.
SWNS
Her mum Nikita, 32, is now urging other mothers to follow their "intuition" as she had suspected Soraya's condition was more serious than the doctors were telling her.
She claims she repeatedly took the brave tot to a number of doctors with a cough that wouldn't go away only to be told there was nothing seriously wrong.
SWNS
She began to worry Soraya often appeared lethargic, was not interested in her food, had regressed on her milestones and wasn't laughing.
Each time Nikita saw a doctor, she was told Soraya had a viral infection and it was nothing to worry about.
SWNS
But earlier this month, Soraya became ill at the family's home and was rushed to Diana, Princess of Wales Hospital in Grimsby by ambulance.
She said:
"Nobody knows a baby like their mum. Mums have this amazing connection with their babies since before they're born."
"I knew my baby wasn't right and nobody listened."
"She was just lethargic, not interested in her food and was just laid there, falling in and out of sleep."
"It was like she was there, but not there. I knew she wasn't right."
"I'd had enough, I knew she'd had enough and I called 999 in the hope that somebody would do something."
Medics discovered Soraya was suffering from Hydrocephalus, a condition in which cerebrospinal fluid (CSF) accumulates within the brain.
SWNS
She was transferred to Sheffield Children's Hospital, where last week a CT scan uncovered an atypical teratoid rhabdoid tumor on her brain.
Soraya had been scheduled to attend a paediatrician's appointment in March, but Nikita believes she would not have made it that long.
SWNS
She said:
"That appointment was scheduled for what is now going to be her third round of treatment."
"I had just listened to the GP, I'd have waited until March 20 and I don't think she would have made it."
"If I hadn't called that ambulance, she wouldn't have made it. She would have died."
"It all started as a cough and now the cancer has ravaged her brain."
"She has been put in this position because GPs couldn't find a temperature or something that would show up in a urine sample."
"There was 37 consecutive days of illness at one point. She just never got better."
Brave Soraya's symptoms began in mid-December with a cough that would just not stop.
SWNS
Worried Nikita rushed her to A&E, where she spent more than five hours before being told it was "probably just a viral infection".
However, almost two weeks on, her condition continued to worsen and a discharge started leaking out of her ear.
SWNS
Soon after, she developed a weakness in her left side.
Nikita immediately arranged a GP appointment, but was again told by doctors her daughter probably had a “viral infection".
SWNS
She said:
“They couldn't see her ear because there was too much debris. They swabbed her ear and gave us antibiotics and started us off with ear drops."
“They said there was nothing remarkable about her ear and it was just a viral infection."
Nikita added:
"The cancer is genetic, so I am not saying she wouldn't have got it."
"But it could have been caught earlier and they could have prevented her a lot of pain."
"One doctor said 'I'm not going to suggest blood tests yet as it is too invasive'—I would rather they'd have done that than what she is going through now."
"It's not fair she has gone through so much pain."
"No child should have to go through that."
"It got to the point where she wasn't even crying anymore, she was too tired."
"The paramedics said she looked 'fed up' when they took her to hospital."
Soraya's operation was hailed a "success" by Nikita as surgeons managed to remove more than 90 per cent of the tumor.
SWNS
They could not remove any more because the nerves that control her left-hand side of the body run through the tumor.
She will undergo around 18 weeks of intensive Chemotherapy to remove the remaining tumour.
Soraya is expected to be able to go home on Monday, but will have to return to hospital for the first round of treatment on Thursday.
SWNS
Nikita, of Immingham, Lincs., has now launched a petition—Soraya's Law—calling for the NHS to take mother's intuition more seriously.
The petition, which has gained more than 750 signatures in under one week, reads:
“My aim is for mothers to be listened to and taken seriously, making a mother's intuition a genuine diagnostic tool for the NHS."
“There is not a person in the world who will know a baby like their mummy."
“As a mother, it is impossible not to know your child inside out. We can read our children like books."
A public Facebook page called Soraya's Army and a GoFundMe page have been launched to help support the family financially while they care for the youngster.
Nikita's partner, Simon Bratton, has had to take time off work while the couple travel back and forth to Sheffield for Soraya's treatment.
They have also had to rely on help from family and friends to help care for the couple's three other children Sam, six, Sharlee, nine, and Sean,11.
Nikita added:
"I can't have another baby go through what mine has been through."
"If I save just one baby, that's enough."
A spokesman for the North East Lincolnshire Clinical Commissioning Group said:
"We have not had any direct contact from Mrs Owen-Brown, however the CCG takes concerns and complaints very seriously."
Visit www.change.org/p/nhs-soraya-s-law to sign the petition, www.facebook.com/groups/622700798554557/ to join the Facebook group and www.gofundme.com/f/sorayas-law to donate to the family's fund.
*A version of this story originally appeared on SWNS and was written by Ashley Pemberton