Meet the Georgia family fighting to strengthen state’s organ transplant laws
by Nick Wooten, January 29, 2020
Gracie Joy Nobles likes to play with toys. The smiley, almost-11-month-old sat among a pile of shiny, loud objects, but her favorite is a rattle she got during a lengthy stay at a children’s hospital in Augusta.
In the comfort of their Washington County home, her parents, Erin and David, huddled around their little girl on the carpeted floor as she played. Her 8-year-old brother, Walker, assembled Star Wars Legos nearby. It’s a frequent occurrence now, but the Nobles family wasn’t always able to spend time together like that.
In fact, they weren’t always sure Gracie would be coming home from the hospital.
Doctors told the Nobles family that Gracie was a miracle child. She was born in March 2019 with Down syndrome and a heart defect so serious that it required her to have open-heart surgery before she was four months old.
Then came months of recovery. The couple spent time separated, stuck in different cities while David worked and Erin stayed with Gracie. But the surgery was successful, and Gracie’s heart is now fine.
But for the Nobles, it isn’t about what happened to Gracie. It’s the fear of what might have been, and the sobering realization that it has happened to others.
If their daughter had needed a new heart, the couple said, she might not have gotten one. Georgia doesn’t have a law in effect that prevents medical professionals from denying people organ transplants because of their disability.
The federal Americans with Disabilities Act prevents this sort of discrimination, but transplant centers and medical professionals nationwide are often unaware, according to a federal agency that offers recommendations to lawmakers.
The Nobles family, along with Georgia state Rep. Rick Williams, R-Milledgeville, and other disability advocacy groups, are working to get those protections passed here. The bill, entitled Gracie’s law, could be passed this year by the Georgia Legislature.
“We want to make sure she’s not discriminated against if she were ever to need anything in her lifetime as well as other people affected by disability,” David said.
‘THIS IS A MIRACLE’
Gracie’s life has been “one shock after another,” Erin said she likes to tell people about her daughter.
David and Erin Nobles, who met as freshmen at Milledgeville’s Georgia College & State University on Sept. 11, 2001, married in September 2008. They had their first child, Walker, in 2011.
But a second baby eluded them. They tried for years before finally giving up.
“We had not gone to a fertility specialist or anything of that nature,” Erin said. “We were not going down that avenue. We didn’t feel the Lord was leading us to do all of that. ...The Lord would just have to cause it to happen.”
In late July 2018, they finally got their wish. Erin called David with stunning news. She was pregnant.
At nine weeks, Erin went in for a blood test to determine the gender of their child. When the doctor’s office called her back at work a few weeks later, the couple expected to hear good news.
But Erin knew something was wrong when she answered the phone. There was no excitement. The couple was informed that their child had a 90% chance of having Down syndrome.
“Everything just shutdown,” Erin said. “My whole planet stopped. Everything stopped. My life stopped.”
The doctor wanted the family to schedule a meeting with a geneticist, and the couple said they worried abortion might be suggested.
The couple soon found a new doctor who “gave them hope” and could better relate to them. But, the Nobles family got more bad news in December when Erin went in for an anatomy scan ultrasound. They couldn’t find the ventricles in the bottom of the developing child’s heart.
Another scan about a month later with a neonatal cardiologist was set. Again, Erin said she knew that bad news was coming. She was sitting in the car in the parking garage before the appointment when she heard a voice.
“I heard the Lord. He said ‘This is either going to make you bitter or it will make you better,” she recalled. “So, I knew what we heard would not be good, but I also knew that was his way of saying you have a choice in how your future is going to go.”
The voice was right. Doctors found what they believed to be a complete hole in the center of Gracie’s heart — a more serious defect that would require surgery at a young age, Erin said.
The couple knew it was going to be a tough few months. Doctor and specialist visits occurred sometimes two or three times a week. They didn’t decorate the nursery because they weren’t sure what was going to happen, David said.
Erin started getting contractions that would stop and start weeks before Gracie’s expected due date. She knew the baby would be coming soon. She went into labor in the early morning hours, and David sped the nearly 70 miles to Augusta University Medical Center in the middle of the night.
Gracie Joy Nobles was born March 9, 2019, surrounded by a team of 20 or 30 medical professionals. It went well, and Gracie spent 17 days in the neonatal intensive care unit.
“I looked at her when David brought her over to me, and I knew that above all else, I was going to do everything within my power to fight for her, to defend her, to protect her, and to be her voice,” Erin said.
Gracie came home, but the family was only whole for a short time. At 1-month-old, Gracie started showing signs of congestive heart failure. The family spent the next two to three months living in the hospital. Erin remained in Augusta while David went home to Warthen with their son, Walker.
Gracie’s fluid intake was constantly monitored. She could only handle so much, and medications she was taking were causing major kidney problems. She got very sick.
“There was one weekend where we thought we might lose her,” David said. “Her mom and I started to prepare for the worst.”
At about three months old, doctors told the family Gracie needed to have the surgery no matter what. Most children who have the procedure are between four and six months old, the couple said
The family worried that Gracie’s kidneys would be damaged during surgery. Members of Holding Forth the Word of Life Ministries, the church the Nobles family attended in nearby Wrens, Georgia, came to Augusta to pray for Gracie the day before the scheduled surgery.
By the next morning, her kidney functions drastically improved.
“The physician said ‘This is a miracle, what has happened,” Erin said. “We had the best case scenario. ...That moment was huge for her. It was huge for us.”
Doctors were not only surprised by the improvement in Gracie’s kidneys, but also by her ability to recover following the surgery, David said.
“I think it was one of the largest holes the doctors had ever seen up there,” David said. “They always walked in the room with a smile on their face, very optimistic. But after the surgery, we learned how serious it was. I don’t know if they expected her to survive.”
A BEAUTIFUL PARTNERSHIP
Gracie recovered from the surgery and was released from the surgeon’s care two months later. But the family didn’t realize how serious things could have been until Erin did a little research.
In the midst of Gracie’s recovery, Erin started finding families with Down syndrome on Instagram to make connections. She developed relationships and stumbled across advocates in other states who were working to pass organ transplant discrimination bills. Georgia didn’t have a law like that on the books.
She told David one night on the couch that if Gracie had needed a new heart, she might not have gotten one.
The Nobles, through their newly established connections, have heard stories from other families claiming loved ones were denied organ transplants in Georgia because of their disability. They also found statewide advocacy groups that could help them.
Among those Erin contacted was the Down Syndrome Association of Atlanta who put her in touch with Stacey Ramirez, the state director of The Arc Georgia. The organization develops programs and advocates for public policy on behalf of people with intellectual and developmental disabilities.
Ramirez has developed an interest in legislation in the several years she’s served with The Arc. One area of interest, she said, was organ transplant discrimination. Both organizations were looking for a family to support legislative efforts. The Georgia Council on Developmental Disabilities is also assisting the family, Ramirez said.
“It’s this beautiful partnership coming around the Nobles family specifically to support their advocacy, and we’re all sharing our expertise in support of their efforts,” she said.
The issue is one that affects more than Georgia residents.
In September 2019, the National Council on Disability, a federal agency that makes recommendations to the president and Congress on how to improve the quality of life for Americans with disabilities and their families, wrote to the president that organ transplant discrimination was occurring even in some states where laws had been enacted.
The agency also found that “many organ transplant centers have policies that bar or caution against placing people with HIV, psychiatric disabilities, or intellectual and developmental disabilities on the waiting list to receive an organ transplant” despite the fact the federal law prevents such discrimination, according to the letter.
The agency’s report states that few empirical studies analyzing how transplant centers pick recipients, and in particular, how a disability would influence their selection have been done. A 2008 study by Stanford University showed that 62% of pediatric transplant centers make “eligibility decisions based on disability ... informally, making discrimination difficult to show.”
According to the Georgia Council on Developmental Disabilities, only 12 states have laws in place to stop organ transplant discrimination. They are:
California, New Jersey, Maryland, Massachusetts, Oregon, Delaware, Kansas, Ohio, Pennsylvania, Washington, Louisiana and Indiana.
The National Council on Disability wrote that most of these state laws are relatively new. As a result, it is difficult to tell if they will be more successful than existing federal law. However, enacting state laws should “promote awareness among physicians that this discrimination is illegal,” according to its report.
In an effort to address the issue in Georgia, Erin and David obtain a copy of Louisiana’s organ transplant discrimination bill. The couple found Rep. Williams in the Georgia House to support the bill. David called Williams initially to tell him about Gracie’s Law.
“Within 10 minutes, he emailed me and told me he sent it to Legislative Counsel,” David said.
Williams took the bill to the Georgia General Assembly’s Office of Legislative Counsel for drafting and review services. He picked up a final copy of the bill a couple of weeks ago.
House colleague Mack Jackson, D-Sandersville, will be a second signer. State Sen. Burt Jones, R-Jackson, will support the bill in his chamber, Williams said.
“Anything to give a better quality of life, especially for children, I’m all in favor of,” he said. “This is something that is so important.”
Current language in the bill would, among other things, prevent discrimination against potential organ transplant recipients based solely on a disability.
The new bill also recognizes that a person’s support system can ensure organ transplant recipients receive proper post-transplant care. A common argument is that a person with disabilities will be unable to follow proper post-transplant guidelines, according to advocates.
The Nobles said they started this journey without a clue of what they were doing. Along the way, they said they’ve felt blessed by the outpouring of support they’ve received.
“It’s been overwhelming,” David said. “They’ve been able to bridge gaps that we could not have done ourselves.”
FIRST STEP IN A LONG PROCESS
On a cloudy, Friday afternoon in January, Erin and David woke Gracie up from a long nap. Her parents put her on the floor in front of toys — a series of rattles, a light-up plastic purse, a big yellow ring for chewing and a squishy, green turtle.
For a moment, she’s entertained. Then she started to whine a little bit. Gracie burps, and then she looks up to smile at everyone in the room.
She’ll turn 1 in a few months. She has to use a feeding tube, but outside of the eating issue, she is hitting all of the milestones. She’s sitting up, and David and Erin are trying to get her to stand up. She loves playing on the floor and watching her older brother Walker.
“She can light up a room, and people are just drawn to her,” David said. “Wherever we go, people just take notice of Gracie. There’s such a love for her, and she just displays love. I don’t know what it is about her.”
The Nobles family went to the Capitol on Wednesday for the Georgia Council on Developmental Disabilities’ Advocacy Day to promote Gracie’s law, where they and other supporters spoke with Georgia lawmakers about the bill. It’s the first step in a long process. If everything plays out the way they want it to, Gracie’s law will be passed this session.
“All the right people were put in our place this whole way,” David said. “God had his hand on this.”