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Parents outrage as baby son is denied heart transplant 'because he is disabled'

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Recovery: Marverick at home in New York in his mother, Autumns arms - as he recovers from his life threatening heart failure Recovery: Marverick at home in New York in his mother, Autumns arms - as he recovers from his life threatening heart failure  

A New York couple claim their desperately ill newborn son was denied a heart transplant by hospital because he suffers a mental disability.

Autumn Chenkus, 32, and her boyfriend, Charlie Higgs, allege that New York-Presbyterian Hospital in Manhattan refused to put their child, Maverick, onto a transplant list because he had a rare genetic defect.

Refusing to believe that their sons Coffin-Siris syndrome was a valid reason not to put him on the transplant list, Autumn and Charlie embarked on a month-long battle to get Maverick treatment - culminating in a fateful trip to Boston in June.

Named after Tom Cruise's fighter pilot character in Top Gun, little Maverick was born with a severe heart defect in Manhattan in September of 2012.

He had his first surgery at the age of 4-days old at Morgan Stanley Children's Hospital, a part of the New York-Presbyterian system and was kept in intensive care through Christmas.

However, his condition began to deteriorate and by March he was fast running out of options.

It was a god-send for his parents when he was accepted as an eligible transplant candidate on March 18th, but just two days later everything changed.

Disgust: Autumn Chenkus and Charlie Higgs were distraught to be told by New York-Presbyterian Hospital refused their child for a heart transplant in March Disgust: Autumn Chenkus and Charlie Higgs were distraught to be told by New York-Presbyterian Hospital refused their child for a heart transplant in March

Disgust: Autumn Chenkus and Charlie Higgs were distraught to be told by New York-Presbyterian Hospital refused their child for a heart transplant in March

Loving mother: Autumn with Maverick as he recovered in hospital in New York as he descended into heart failure after his birth in September 2012

Loving mother: Autumn with Maverick as he recovered in hospital in New York as he descended into heart failure after his birth in September 2012

Charlie and Autumn were called into a hospital conference room and informed that their son had been diagnosed with Coffin-Siris syndrome.

The disease causes children to grow up with intellectual and development disabilities as compared to other children.

According to a recent study, babies with Coffin-Siris sit, walk, and speak later than other children on average.

Fewer than 100 cases of Coffin-Siris have been reported worldwide since it was identified in the 1970s.

On March 22nd, another meeting was convened by the doctors and Autumn and Charlie were told that their son was no longer considered a candidate for transplant.

Doctors said that those with Coffin-Siris tend to have compromised immune systems and are also at risk for tumors and infections according to a report from CNN.

Autumn and Charlie were told that because of this any transplant would be too risky and therefore he was sadly being taken off the list.

His medical record includes a note about the meeting, signed by Dr. Linda Addonizio, medical director of Presbyterian's pediatric cardiac transplant program.

'His genetic defect is associated with increased infections and tumors, which would be greatly magnified combined with the immunosuppression involved in transplantation,' the note said.

'I discussed that this does not mean we are giving up on Maverick, but trying to improve his heart failure as best as possible and get him to gain weight.'

Happy: Charlie and Autumn with Maverick at home in New York after returning from hospital in Boston after successful treatment

Happy: Charlie and Autumn with Maverick at home in New York after returning from hospital in Boston after successful treatment

However, according to Autumn, the doctors were cold and told her that she should simply enjoy the time she had left with her son.

Stunned, shocked and distraught by the news, Autumn suspected that doctors were not giving her son a chance.

She emailed the author of the Dutch study which New York-Presbyterian physicians cited as a reason for not giving Maverick the chance of a transplant.

Dr. Gijs Santen at Leiden University Medical Center in the Netherlands wrote back saying catergorically that children with Coffin-Siris do not have compromised immune systems.

'It is difficult to use infection risk as a reason not to perform a heart transplant,' said Dr. Gijs Santen to CNN.

More to the point, Autumn opened up a dialogue with Dr. Grange Coffin - who along with Dr. Evelyn Siris discovered the syndrome in 1970 at the University of California.

'Coffin-Siris is not a reason to say no to a transplant,' said Dr. Grange Coffin. 'I would say it's wrong to do so.'

Presbyterian still wouldn't budge. They insisted they would not give Maverick a transplant.

Autumn called another meeting on April 12, when Maverick was 6 months old and doctors repreated their position that there would be no transplant.

Sick: Maverick has the genetic condition Coffin-Siris syndrome - which can lead to developmental issues with children as they grow older

Sick: Maverick has the genetic condition Coffin-Siris syndrome - which can lead to developmental issues with children as they grow older

Autumn said that the doctors even looked at their watches to indicate that they had somewhere else they would rather be and left as she began to sob.

'The more I fought, the less they listened,' she said. 'But I knew that going home to die was not his fate,' said Autumn.

Refusing to let their son died, Charlie and Autumn tried to get him a transplant and contacted Children's Hospital of Philadelphia, the Cleveland Clinic and Boston Children's Hospital.

On May 6 they were turned down by Children's Hospital of Philadelphia and a few days after that by the Cleveland Clinic.

Desperate, Autumn and Charlie drove to Boston to speak face to face with the doctors there to save their sons life.

They got what they wanted on Mary 18, Maverick was taken by ambulance from New York to Boston where he was prepared for surgery.

His medications were changed and his weight increased. Maverick's condition improved and amazingly on June 7, doctors called in Autumn and Charlie and told them that their son would not be getting a transplant.

This time however, it wasn't because of his medical prognosis it was because he didn't need one anymore.

'I felt like the weight of the world had been taken off my shoulders,' she said.

'The difference between Boston and all the other hospitals is the way they cared -- the fact that they cared,' she said.

Charlie and Autumn have filed a complaint againt New York Presbyterian Morgan Stanley Children's Hospital.

'The hospital first said the decision was based on Maverick being at a heightened risk for tumors and infection. We later learned that this was false information and that Maverick is not at a heightened risk for tumors or infection,' Higgs wrote in the complaint according to CNN.

 

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