Parents of two children who died of a cancer that 95% survive are suing doctor

Two children have died of a form of eye cancer that rarely leads to death, and their parents are suing a hospital for negligence.

Damian Creed and Salette Ruiz were both diagnosed with retinoblastoma at the age of two in Miami, Florida.

It was unusual – the rare, aggressive eye cancer affects just 200 to 300 children a year in the United States.

However, prognosis is usually good: 95 percent of sufferers survive.

But Damian and Salette, who both received chemotherapy from Dr Timothy Murray at Nicklaus Children’s Hospital in Miami, became part of that tragic five percent.

They died within six days of each other, in the same hospital, despite never meeting.

Now, their parents are suing the hospital and the doctor for failing to provide the standard treatment, surgical removal of the affected eye.

‘I had to leave that hospital without my baby,’ Damian’s mother Sarah Hancock told the Miami Herald. ‘I had to leave him in that morgue and drive home without him.

‘They killed my kid.’

Salette Ruiz

Damian Creed (left) and Salette Ruiz (right) were both diagnosed with retinoblastoma aged two in Miami, Florida. Though 95 percent of sufferers survive, Damian and Salette died the same week in 2016

The two families have now joined forces, suing Drs Murray and Khatib for negligence in care, and Nicklaus Children’s for failing to monitor their decisions.

Dr Murray is regarded as one of the nation’s top practitioners for retinoblastoma, and allegedly hadn’t lost a patient before Salette and Damian.  

Retinoblastoma is a rare type of eye cancer that usually affects children under the age of five.

As it is usually caught early in the US, the vast majority of children with the disease are successfully treated.  

It is specifically a cancer of the retina, which is the light-sensitive lining at the back of the eye, and it can affect one or both eyes.

A fault gene is responsible in about 40 percent of cases. This can be inherited from the sufferer’s parents or may occur spontaneously.

The most common symptoms are the pupil looking like a cat’s eye – typically seen in photos – and the child developing a squint.  

While small tumors can usually be treated with laser or freezing treatment, larger tumors may require chemotherapy or surgery.   

Damian’s story

Damian was diagnosed when he was two, in May 2014, when his left pupil dilated and didn’t go back to normal. 

His mother took him to get checked at their local hospital in Naples, Florida, and a CT scan revealed a possible tumor. 

Mrs Creed told the Herald they were immediately airlifted to Nicklaus, which is 100 miles away in Miami. 

That day, a doctor said he suspected retinoblastoma but that Dr Murray – a specialist who had treated 370 other kids with this disease – could confirm the diagnosis. 

The next day, they had their first consultation with Dr Murray, where he confirmed that Damian had an advanced case of retinoblastoma, and also had a detached retina that was so damaged he would never regain the sight in that eye. 

Mrs Creed claims she asked Dr Murray immediately if he would remove the eye, which she had discovered to be the most effective way of eliminating the cancer after frantically searching for hope on Google.

Damian was diagnosed when he was two, in May 2014, when his left pupil dilated and didn't go back to normal

Damian was diagnosed when he was two, in May 2014, when his left pupil dilated and didn’t go back to normal

WHAT IS RETINOBLASTOMA?

Retinoblastoma is a rare type of eye cancer that usually affects children under the age of five.

As it is usually caught early in the UK, 98 per cent of children with the disease are successfully treated.

About 50 children develop the condition every year in Britain.

It affects up to 300 youngsters annually in the US.

Retinoblastoma is specifically a cancer of the retina, which is the light-sensitive lining at the back of the eye.

It can affect one or both eyes.

A fault gene is responsible in about 40 per cent of cases. This can be inherited from the sufferer’s parents or may occur spontaneously.

The most common symptoms are the pupil looking like a cat’s eye and the child developing a squint. 

The cat eye look is most commonly seen in photos.

Small tumours can usually be treated with laser or freezing treatment.

Larger tumours may require chemotherapy or surgery.

Source: NHS Choices

Dr Murray, she claims, said no. 

She recalled Dr Murray saying: ‘We open up a whole other can of worms when we remove a child’s eye so young. The socket can’t develop properly. It stops growing. There are a lot of issues that go with that. It’s a slippery slope… We have to balance. So we wait as long as we can to remove the eye to keep the socket safe and keep it healthy.’ 

Damian subsequently underwent a few rounds of intra-arterial chemotherapy.

In November 2014, six months after his diagnosis, Damian was given the all-clear.

But in June 2015, his eye swelled painfully, pushing out of his socket.

Dr Murray said the time had now come to remove the eye surgically, and did so in July 2015. After the operation he said, again, that Damian had no trace of cancer.  

But that was not the case. 

They went for a follow-up MRI scan two months later, in September 2015, which revealed the worst: the cancer had spread to his optic nerve, meaning it had infected his brain. 

According to his father Ron Creed, ‘a quarter of his brain’ was consumed by cancer cells.

Damian’s care was then passed to a neurooncologist at Nicklaus, Dr Ziad Khatib. 

Damian was given the all-clear, but months later a scan revealed it came back. It was only then that he got his eye removed. Months later, however, a scan showed it had spread to his brain

Damian was given the all-clear, but months later a scan revealed it came back. It was only then that he got his eye removed. Months later, however, a scan showed it had spread to his brain

In a desperate bid to control it, Dr Khatib put Damian on high dose systemic chemotherapy, low-dose chemotherapy, and proton beam radiation therapy (a targeted form of radiotherapy), the family explained on their GoFundMe page.

Though there was some shrinkage of the tumor after the radiation therapy, none of it could contain the cancer. 

Throughout, Damian, whose immune system was weakened by all the drugs, suffered fevers, infections, and even sepsis, a life-threatening blood infection.   

Eventually, in May 2016, the family tried their final option: a stem cell transplant, transplanting bone marrow from a donor into his immune system. The highly risky operation is hit-and-miss. It had worked wonders in some, rejuvenating their body to attack the virus. In others, the very operation has proved fatal, as the recipient’s immune system attacks the new cells. In others, it is simply futile. 

Damian saw no change in his condition, and began rapidly worsening.  

He died in November 2016, at the age of four, at Nicklaus.

Salette’s story

Salette, too, was refused removal as a first-line treatment. 

The little girl from Miami was referred to Nicklaus by a local eye surgeon at the age of two in November 2013, the family said on their GoFundMe page.

According to her father, Jorge Ruiz, Dr Murray said it was the worst case he had ever seen of retinoblastoma. 

But when they asked what could be done, he told the family that surgery would not be appropriate in this instance. 

Instead, he prescribed five rounds of intra-retinal chemotherapy, insisting after each one he saw promise; that the eye was ‘dead’ but stable.  

Salette's family believe she could have been saved if she'd had her eye out straight away

Salette’s family believe she could have been saved if she’d had her eye out straight away

However, eventually her eyes and arteries could not handle any more of it, so she was put on a general course of chemotherapy for most of 2014. 

In early 2015, her eye swelled up. Dr Murray, Mr Ruiz said, concluded that the eye was ‘dead’ and needed to be removed.  

Ruiz said he was baffled by the diagnosis, and why it hadn’t happened after her first visit. 

‘If he sees her Friday [for the first time] and Monday we’re removing her eye, Salette would not be dead and we wouldn’t be here,’ Mr Ruiz told the Herald.

‘But he started to invent things, doing chemotherapy, radiation, and that opens a path for the cancerous cells to spread. If it’s the most aggressive you’ve ever seen, then remove the eye.’  

After the operation, in May 2015, Dr Murray came into the waiting room to Salette’s parents, informing them that the cancer had spread into the optic nerve. 

It meant the disease would be incredibly difficult to contain, treat and even cure. 

Salette, like Damian, was referred to Dr Khatib. 

She spent the rest of her life, largely, in hospital – suffering urinary tract infections, pneumonia and severe vomiting throughout all the treatment. 

In the first week of November 2016, scans revealed the cancer had spread to her right optic nerve and spine. 

Her condition rapidly deteriorated, and she was put on life support. Days later, she was declared brain dead. 

The lawsuit

Both families are demanding unspecified damages for the deaths of their children, which they claim could have been prevented. 

Supporting their case, they have an independent review conducted by an anonymous peer doctor at Nicklaus. 

According to the Herald, the review found Dr Murray made clinical errors in both cases. 

They found Salette’s eye could have been removed straight away, or that, at least, the move could have been considered. 

They found Damian’s case was ‘risky’ because the scans Dr Murray took did not clearly capture everything, meaning he ventured into guess work. 

‘Allowing a child to progress from treated intraocular retinoblastoma to ocular tumor recurrence and then subsequently optic nerve extension and even central nervous system extension (while under observation) is not considered to be within the standard of care at a modern medical center,’ the report states, according to the Herald.

Daily Mail Online has contacted Nicklaus for a comment.



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