Doctors said my three-year-old had constipation – but it turned out to be stage four cancer

By Liam On Jun 9, 2023

A toddler’s cancer was misdiagnosed as constipation by blundering NHS medics.

Ella Formby-Smith, three, had been “going back and forth” to the hospital since birth with crippling abdominal pain.

But doctors initially assumed Ella’s pain was only due to a viral infection or even constipation, her mother Claire claims.

Ella was finally diagnosed with stage four neuroblastoma – an aggressive cancer – in March, after she deteriorated so much that she was “curled up in bed crying in pain.”

Chiefs at Warrington Hospital, where Ella’s cancer was missed, have now launched an investigation into claims that doctors repeatedly missed crucial warning signs of Ella’s cancer.

In stage four, the cancer has spread to parts of the body that are some distance from where it started — usually to the bones, bone marrow, or liver. Intensive treatment, including chemotherapy and surgery, is often necessary to kill and remove the tumor cells. Neuroblastoma affects around 100 children in the UK each year, about six per cent of all childhood cancer diagnoses

Referred to Alder Hey Children’s Hospital in Liverpool on March 16, an ultrasound revealed a large mass in the back of Ella’s abdomen. After an MRI a week later, Ella was diagnosed on March 27

It was only after her condition worsened in March that she was further investigated and diagnosed with stage four neuroblastoma – a rare and aggressive cancer

Mrs Formby of Runcorn, Cheshire, said: ‘We were told she might have been born with this.

“I feel so let down by the number of times we’ve been back and forth.

“I just can’t believe how it hasn’t been discovered in three years that I went to the hospital with stomach problems.”

WHAT IS NEUROBLASTOMA?

Neuroblastoma is a rare cancer that affects children and usually begins in the abdomen.

Around 100 children, mostly under five, are diagnosed each year in the UK.

The disease affects about 800 new children in the US each year.

In about half of cases, neuroblastoma spreads to other parts of the body, especially the liver and skin.

The cause of neuroblastoma is unclear. There may be a connection to family history.

The main symptom is usually a lump in the abdomen, which can cause swelling, discomfort, or pain.

If the disease affects the spinal cord, it can lead to numbness, weakness, and loss of movement in the lower part of the body.

Treatment depends on how far the cancer has progressed and the risk of it returning after therapy.

Surgery and chemotherapy and radiotherapy are commonly used.

Source: Cancer Research UK

Ella has already completed six grueling rounds of chemotherapy.

She now faces surgery, a stem cell transplant, radiotherapy and immunotherapy to treat the cancer, Ms Formby claimed.

‘It’s going up and down at the moment. There are good days and bad days,’ her mother said.

“She has no energy and no mobility whatsoever to run around or play, it took it all out of her.”

“She’s amazing and was active and bouncing all the time, just a happy three-year-old going to daycare, so it literally changed her whole lifestyle.”

Ella had been diagnosed with lactose and dairy intolerance on previous hospital visits, Ms Formby claimed.

“Every other time we’ve been we’ve been told it’s constipation or a viral infection,” she added.

But in February, the pain got “gradually worse” until Ella cried curled up in bed in pain.

A doctor’s appointment advised it was a viral infection, she claimed.

During a second visit later in the month, doctors said they would send Ella for celiac tests.

As the pain intensified, Ms Formby took Ella to Warrington Hospital, where doctors said she would have to wait two weeks for any blood tests, she claimed.

During a subsequent hospital visit after Ella’s condition continued to deteriorate, Ms Formby insisted on further investigation.

Finally referred to Alder Hey Children’s Hospital in Liverpool on March 16, an ultrasound revealed a large mass in the back of Ella’s abdomen.

After an MRI a week later, Ella was diagnosed on March 27.

Mrs Formby said, ‘As soon as she got to Alder Hey it was 100 miles an hour. She is now on her seventh round of chemotherapy.’

Neuroblastoma mainly affects babies and young children. It develops from specialized nerve cells – neuroblasts – left behind by a baby’s development in the womb.

Medics at Warrington Hospital told Ella, from Runcorn, Cheshire, she could also simply have a viral infection, her mother Claire Formby claimed

Ella now faces surgery, a stem cell transplant, radiotherapy and immunotherapy to treat the cancer, her mother Claire Formby claimed

In stage four, the cancer has spread to parts of the body that are some distance from where it started — usually to the bones, bone marrow, or liver.

Each year, around 100 children in the UK and 800 young people in the US are diagnosed with the rare cancer, which is most common in children under the age of five.

About half of those diagnosed with stage four neuroblastoma will live another five years after their diagnosis.

A spokesperson for Warrington and Halton Teaching Hospitals NHS Foundation Trust said: ‘The Trust is very sorry to hear about Ella’s diagnosis at the regional specialist children’s hospital.

An investigation into Ella’s care during her hospitalizations at the Trust is underway.

“We understand that this is a very difficult time for Ella’s family, and we will do everything we can to support Ella’s family during the investigation and ensure that all findings are shared as soon as possible.”

a GoFundMe Campaign has also launched for Ms Formby and Ella, raising over £22,000 since April for Ella’s care.