A family from Frisco fighting to keep their 2-year-old alive is also fighting to keep him close to home after their insurance provider said a necessary heart transplant in DFW would be “out of network.”
Hudson Baker-Doran has been fighting heart failure for nearly a year after doctors said a case of mononucleosis attacked his most crucial organ.
It took doctors two rounds of CPR to stabilize Hudson’s heart enough to begin what would become a long road to recovery.
With the help of his big brother Jaxon and their mother Kelly Baker, Hudson fought his way off an ECMO machine and eventually out of the hospital.
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But come December, doctors at Children’s Medical Center told Baker the pacemaker keeping Hudson alive had led to cardiomyopathy.
“His heart is super sick. It can’t be managed anymore by medicine. It’s starting to affect his breathing, so we’re doing treatments for that,” said Kelly Baker.
Doctors told her it’s time for a new heart.
She’d first prepared when insurance approved them for a transplant during Hudson’s initial stay at Children’s last year.
At that time, doctors were mercifully able to push it off. This time, Baker felt sure she knew what to expect.
“I thought, great. We’re going to get on the list,” said Baker.
Once again, Baker went through Hudson’s insurance provider to make the request, the Teacher Retirement System of Texas, and Aetna, who provides coverage through Hudson’s dad. Though his parents are divorced, it’s the same coverage Baker has had since both are public school teachers.
But this time, Aetna’s response was different.
Baker received a letter that read in part, “We have denied the request for coverage for you to be treated by Children’s Medical Center of Dallas.”
It went on to say the family’s options of hospitals that could provide the transplant “in network,” minimizing the family’s out of pocket cost, included Children’s Hospital Colorado, Children’s Mercy Hospital in Kansas City and Texas Children’s Hospital in Houston.
That puts their closest option nearly 250 miles from home.
In a statement Aetna wrote:
“Hudson and his family are managing a very difficult situation, and our clinical team, including a nurse case manager dedicated to Hudson’s case, have been in regular contact with his family to discuss their care options. While Hudson is covered for a heart transplant at both Texas Children’s Hospital in Houston and Dallas Children’s Medical Center, his family’s out-of-pocket cost are significantly lower at Texas Children’s Hospital because it is in his plan’s network. Texas Children’s Hospital is also part of our Institute of Excellence network, which means it has met outcomes-based quality thresholds and agreed to be in Hudson’s health plan’s pediatric heart transplant network.”
But for his family, the cost of an “out of network” procedure isn’t an option.
That leaves Hudson facing a major surgery in a new city with a brand-new medical team.
“Getting new doctors, getting into their heart clinic, it’s just like a complete start over from day one,” said Baker.
It also means the family will have to move.
Texas Children’s Hospital in Houston requires out of town patients live within one hour of the hospital the entire time they’re on the wait list for a heart. That would force Baker, a single mom, to sell her home, quit her job and leave a support system behind.
“I’ve been in the same district for 13 years. I’m a good teacher. I’m a coach. I’m in the community over there. I just can’t imagine having to leave because we have to go to Houston when this is where we’ve been our entire lives,” said Baker.
Like Aetna, the Teacher Retirement System, or TRS, insists the family has the option to stay.
According to TRS Chief Health Care Officer Katrina Daniel:
“Our hearts go out to the Baker-Doran family as they work through their son’s complex medical needs. TRS health plans are self-funded by districts and employees and cover benefits across nearly 500,000 lives in TRS-ActiveCare. Through its health plan administrator, TRS works hard to provide the highest quality health care for the best value as we manage limited funds. For certain conditions and treatments, TRS uses Centers of Excellence to ensure quality and value. In this case, the Center of Excellence is in Houston at Texas Children’s Hospital. While the Dallas facility has not contracted with Aetna as a Center of Excellence, TRS and Aetna are working with the facility to negotiate the best possible rate. In a situation like this, a family is not required to seek care at a Center of Excellence facility, and therefore would not be required to move to Houston.”
But to get the transplant in Dallas, the family would have to pay “out of network” costs. Baker said that’s not something she can afford.
She’s appealed the decision, writing a letter (see below) pointing to the financial hardship and stress a move would create.
She also has the support of the team that’s cared for Hudson’s heart from day one at Children’s in Dallas, where all of his treatment has been covered “in network” until now.
They also wrote Aetna a letter, stressing their belief that it’s “critical to continue with heart failure management” in Dallas “for continuity of care.”
But on Thursday Baker received a letter denying her appeal, saying there’s “no evidence of the medical necessity for a facility that’s not in the Institute of Quality network.”
“I just can’t believe that it takes this much to just try to get people to do the right thing. I mean, the right thing is to do whatever’s best for him,” said Baker.
Baker’s still hopeful for a Hail Mary. But at the end of the day, she’ll do whatever it takes to make sure Hudson wins yet another battle.