Parents outrage as baby son is denied heart transplant 'because he is disabled'
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
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
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
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.
- Prison intern Kayla Danielle Davis charged with sexual assault
- Lady Gaga 'dumped' by boyfriend as he can't handle her alter-egos
- Mountain biker rockets down ski slope at 135 mph
- Barack Obama: The face of Viagra in Pakistan
- Florida man's smartphone takes a bullet for him
- Sailor from Oregon Jonathon Gibson killed in Red Sea helicopter crash
- Bruce Lee didn't drink, but CGI Bruce Lee is in this liquor ad
- Stern family plane crash: Three killed after homemade plane crashes into nature preserve
- Is this the most sexist TV program in history? Chat show where women strip off as two men critique their naked bodies
- Christopher P. Dona named as Army Ranger killed in parachute mishap
- Cold case unsolved 5 years later
- Meet Colonel Meow, the world's hairiest cat
- Family of I-85 hit and run victim speaks out
- Morehouse men use spring break to mentor students
- Paulding County gym teacher Robert Cartwright accused of molesting student
- 1,000 mph car with Bloodhound rocket fired for first time (video)
- Buyers of Dell's new Latitude 6430u Ultrabook complain it smells of cat urine
- Magistrate: Drunken driver Tommie Robinson Jr wrecked going over 100 mph, killing passenger
- Dylan Murray: The next big thing in racing?
- New episodes of Family Guy and American Dad pulled
- Nike’s Sexist “Gold Digging” Shirt Under Fire
- Tech Check: Smartphone memory hogs
- 'Mars Needs Moms' review: A charming, subversive, minor addition to CGI family film club
- Megyn Kelly Pregnant: Fox News anchor, 42, announces third pregnancy live on air
- Pervert Pastor James Harris Found Guilty of Sex Acts swallowed mints, not pills, test shows
- Caught on camera: Armed robbers nab prescription drugs
- Marietta man, 34, convicted of molesting teenage girl
- Police arrest 26-year-old Kerrianne Johnson for child molestation
- Lena Dunham strips off and Jimmy Kimmel gets punched in the face in hilarious Emmys opening skit
- Southwest High School Plans to Raise Graduation Rate
- Missing Malaysia flight: Probe into why FIVE passengers checked in but never boarded as searchers say they have found no wreckage, no signals and no clues
- Antonio McDyess Buzzer Beater: Spurs Beat Lakers With Last-Second Tip-In (VIDEO)
- Kennesaw pastor John Pinkston facing child molestation charges
- Crack-smoking mayor knocks down councillor in stormy debate
- Jeremiah Fogle, 57, killed wife Theresa Brown and shot 2 pastors
- Tennessee man and his current wife arrested in ex-wife's slaying in Germantown
- Two teens critical after plummeting 400ft down sheer granite rockface at Stone Mountain Park
- Man (or Superman?) survives being hit by train traveling 110 mph
- Police arrest suspect Andrae Dinkins in slaying outside billiards hall
- RSS Syndication
- Funny Wi-Fi network names that will alienate and amuse your neighbors
- Westgate mall survivor Sneha Kothari Mashru tells 'I used dead teen's blood to fool terrorists'
- Mayim Bialik, Husband Michael Stone Finalize Divorce
- Louisa Ball: Real-life Sleeping Beauty who sleeps for two weeks at a time
- Justice Dept. appealing morning-after pill decision
- Britney's Spears suffers from scaly feet
- Cops: Wife Kia Jeffries kills former pro boxer Earnest Abdul-Mateen in self-defense
- lagos nigeria 23401 ( Nigerian Dating Scam ) 380
- Pastor Samuel Chapman jailed on child sex charges 79
- Asst. Principal’s Son Chandler Brookins Accused Of Rape In School Bathroom 70
- McDonald's Manager Tiffany Allen Accused Of Punching Customer 68
- Mother Of 5 Wazineh Suleiman Missing After Going To Rent Movie 31
- Teacher Ashley Payne fired for posting picture of herself holding beer on Facebook 29
- 15-Year-Old Held In Girlfriend Angel Freeman's Killing; Gun Found In Creek 26
- New Mexico pastor Gregory Griego, woman, two girls and a boy shot dead during Saturday night shooting spree 25
- 'Wrap your legs around my head': Married Fox weatherman Geoff Fox fired after 'inappropriate' sexting chats with female photographer 22
- Teen Alex Dahm charged with drug possession 21
- Marietta Teen James Glover to be Tried as Adult in beating of a 94-year-old man 20
- Syfy's new show 'Defiance' sucks 20
- Dekalb County Teen Marquis Overstreet Found Shot, Killed, Stabbed 30 Times 19
- Joyriding teens Dustin Surrett, Tessa Upton nabbed in stolen Jaguar 19
- 17-year-old Quavante Combs drowns in Lake Lanier 18
- Husband James Felio Killed By Police After Fight With Wife 17
- James Taylor Named By Colleagues As Pilot From Cockpit Rant 17
- Babysitter Loni Bouchard 'had sex with boy, 14, she was hired to look after' 16
- Suspect In Double Homicide Michael Ntiamoah Is Federal Officer 15
- Police: Woman talking on cell caused crash killing 2 15
- Teacher Shannon Schmieder Sentenced to 40 Years for Affair with 14 Year Old 15
- Police: Ex-Substitute Rene Frank Pregnant With Student’s Twins 14
- Colin Kaepernick: Biological mother Heidi Russo wants relationship with quarterback son she gave up 14
- Teens Sarah Riffe, Michael Perry killed by Jeep in east Georgia town 13
- Gwinnett, Forsyth teens Brandon Hodges, Christian Walker, killed in wreck 13
- Tennessee woman Neena Costanza charged in death of her baby girl by her boyfriend 13
- Teen Demarquis Elkins Arrested in Georgia Baby Shooting Death 13
- Emma Watson suffers wardrobe malfunction night out 12
- Fleeing Driver Adam Sides Hits Officer Head-On During Chase 12
- Smyrna Police Officer Curtis Clyde Cook Fired After Drug Bust 12
- 16-Year-Old Son Charged In Crash That Killed His Mother 12
- 3 Pedestrians Hit, 2 Dead near Interstate 675 in Stockbridge 12
- Atlanta Woman Lashawna Threatt Dies after Fall from W Hotel Room 11
- Florida Man Steven Cozzie Held In Slaying of Georgia Teen Courtney Wilkes in Florida 11
- PICTURED: The assistant Melissa Nelson fired by dentist because she was 'irresistably attractive' and 'threat to his marriage' 11
- Teens Jekari Strozier, Antonio Pass, Johnathan Anthony, Kemonta Bonds charged in death of Mableton man 11
- Teen Cheyenne Sauls Killed In Crash; 17-Year-Old Driver Charged With DUI 10
- Daytona Woman Katie Burson Dies After House Party Shooting 10
- Florida woman Danisa Landaeta arrested for drawing picture of bomb on friend's bag at Miami International Airport 10
- Cops: Mableton Woman Chakaya Folborg stabs sister to death with steak knife 9
- Atlanta Woman Crystal Cross Alleges Beating From Ga. State Patrol 9
- UPDATE: Teen Terry Johnson, Charged In Murder of Shakira Hudson 8
- LA Fitness Manager Juhahn Belcher 's Death Ruled Suspicious 8
- Newnan officer Josh Keller shoots girlfriend in abdomen 8
- Off-Duty Officer Shoots Teen In Nightclub Parking Lot 8
- Dunkin' Donuts employee Melissa Redmond busted for prostitution; sold sex out of restaurant 8
- Teenage Boy Cody Riddle Drowns In Boone Lake 8
- Female Driver Priscilla Johnson Charged After Hitting 3 Teens with Car 8
- Pedestrian Latara Worthy run over, killed in Union City 8
- Revealed: Dramatic pictures of Trayvon's lifeless body as new evidence shows Zimmerman bleeding with 'broken nose' 8
Rate this article
|PHOTOS: Plastic Surgery Celebrity||Awkward family photos|
|UPDATED: Faces of Meth||PHOTOS: Celebrities all a-Twitter|