Durbin shares Tinley Park family’s story
Senator highlights their medical and financial journey during confirmation hearing for Barrett
During the first day of confirmation hearings for Supreme Court nominee Amy Coney Barrett on Monday, Illinois Sen. Dick Durbin referenced a Tinley Park family that he says would have been driven into bankruptcy were it not for the Affordable Care Act’s provision that lifted lifetime caps on benefits.
Sue and Ken Murray’s son, Kenny, was born in November 2013 and needed three open heart surgeries during his first 14 months, Durbin said while addressing Barrett and the Senate
Judiciary Committee. Health care costs for the boy’s first four months cost about $1 million, Durbin said.
Before his birth, Kenny was diagnosed with multiple congenital heart defects, and he underwent the first of what would ultimately be three open-heart surgeries inJanuary2014, whenhe was 6 weeks old, his mother said Monday. He had a second surgery in February 2014 and a third in January 2015.
Doctors told the family there was a good chance he would survive the initial surgery, “but there was also a chance he would not,” SueMurray said.
Thefamily’s insurance coverage carried a lifetime maximum cap of $1 million, andtheAffordable Care Act took effect six days before his surgery. Kenny went into the hospital the day after Christmas in 2013 and wasn’t discharged until the following April. Within a few months of being in the hospital, Kenny’s medical bills had surpassed $1 million.
Kenny will require another heart surgery within a few years, Murray said.
“If they can put a lifetime maximumback on him thatwould be a very catastrophic situation for Kenny,” his mother said. “That is whywe feel it is important to share
his story because we want to advocate for the millions of people who need it.”
Kenny and his family met Durbin in June 2019 as part of the Speak Now for Kids Family Advocacy Day in Washington, organized by the Children’s Hospital Association. Mike Farrell, president of Advocate Children’s Hospital and the hospital’s chief medical officer, accompanied the family.
Durbin’s office contacted the family recently and asked permission to share their story, Murray said. But she didn’t know it would be part of the Barrett hearings and make national news.
“I’ve been getting flooded with messages from friends and family and people just thanking us for speaking out,” she said “It was a honor to be able to share his story to help other people keep these protections in place.”
Before Barrett was a federal judge, she questioned the reasoning behind Chief Justice John Roberts’ majority opinion upholding the 2010 health care law. The law is being challenged again, with oral arguments set for Nov. 10, a week after the presidential election.
Democrats argued Monday at Barrett’s confirmation hearing that the Affordable Care Act is at serious risk if Barrett is confirmed to the high court.
In remarks during Monday’s Senate proceedings, Durbin said Republicans in Congress have been obsessed with repealing the act for years, but didn’t have the vote.
“They couldn’t get it done in the House. They couldn’t get it done in the Senate, thanks to three brave Republicans including John McCain. And now they’ve got to rely on the court to do theirwork,” Durbin said.
“Judge Barrett you’re on the record, you wrote an article in which you criticize the NFIB versus Sebelius case where Chief Justice (John) Roberts was the deciding vote of holding the ACA. Now your nomination is moving forward at unprecedented speed. So what’s at stake?”
Durbin then showed photos of the Murray family and shared their story, ending with a photo of Kenny behind him.
“Here he is. Wouldn’t you want him on your team? I sure would,” Durbin said.
Sue Murray said when her son came home from the hospital he required 22daily medications alongwith oxygen as well as occupational, physical therapy and speech therapy five days aweek.
His big sister, Maddie, now 10, “was a big part of his coming along,” helping out mom and dad with her brother’s care, Murray said.
Now 6, Kenny is a first grader at Christa McAuliffe Elementary in Tinley Park. Maddie is in the fifth grade.
He continues to regularly see a cardiologist and pulmonologist, but can take part in most activities except things that are too taxing on the heart such as football or soccer, Murray said. “He won’t be running any marathons,” she said.
During the COVID-19 pandemic, the family has enjoyed activities such as bike rides and picnics and the kids playing outside — but maintaining safe distance — with neighborhood friends, Murray said.
She said that due to Kenny’s cardiac issues as well as having asthma, they had already “been very cautious about cleanliness” and keeping their son in a bubble, to a degree.
“We have been trying to give him and Maddie some social interactions, although carefully,” Murray said. “It’s a tough balance.”