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ST. LOUIS — For over a year, 14-year-old Charlotte Dubois has been stuck in a hospital room, where she has little contact with the outside world.

A hospital is not a homeless shelter or foster home, but that’s what SSM Health Cardinal Glennon Children’s Hospital has been for Charlotte since May of last year, when she was taken into protective custody after her mother was charged with neglect and their house in Collinsville was condemned.

Charlotte has intense medical needs, including lengthy dialysis treatments at least three times a week and a special diet. She needs a kidney transplant.

She’s lingered in the hospital because she’s in a dangerous Catch-22 — too sick to find a home, but unable to get the transplant she needs because she doesn’t have a home.

“The only reason I don’t have stable housing is because I don’t have a transplant … but I can’t get a transplant until I have stable housing,� Charlotte said. “I don’t get it.�

Charlotte and others trying to help her blame the Illinois Department of Children and Family Services for not working diligently or quickly enough to pursue living options. But an agency official said Charlotte’s unique and complex case involved a series of logistical hurdles.

“This is not a situation that we want to see any of our children in, to be placed in a hospital for a year or longer. That is never our intention. If it can be avoided, we never want to see that happen,� said Heather Tarczan, DCFS director of communications.

The case, however, comes a year after a review of dozens of confidential juvenile court files by the in Illinois that in detention centers, shelters and psychiatric hospitals after doctors cleared them for release.

DCFS Director Marc Smith also last year for failing to properly place such children in a timely manner. An appellate court judge , ruling the agency was doing all it could, but acknowledged the process was ineffective.

Smith, appointed as director in 2019 by Gov. J.B. Pritzker, has said in previous news reports that he has been working to overcome budget cuts from 2015 to 2017, staffing issues and challenges from the COVID-19 pandemic.

Officials with Cardinal Glennon declined to provide interviews for this story.

A solution for Charlotte, however, is on the horizon thanks to an Indiana couple, Tom and Amanda White, who want to care for her, and an effort by Charlotte’s court-appointed attorney, Mike Rousseau of Belleville, to think outside the box.

On June 22, Charlotte left her hospital room for a court hearing at the St. Clair County courthouse in Illinois, where a judge would decide whether to transfer her guardianship to the Whites.

With few clothes of her own and rarely a chance to dress up, Charlotte chose a soft pink dress with ruffles along the edges, the deep V-neck on her tiny frame showing the catheter in her chest used for dialysis.

When a friend pitched in recently to buy Charlotte some shoes, she insisted on the most impractical pair — white high heels adorned with strands of pearls, sparkly butterflies and pink ribbons and tulle. She got to wear them to the hearing too.

Charlotte wasn’t sure if DCFS would oppose the plan or what the judge would decide. But she wanted to go with the Whites, whom she described as long-time family friends.

“Yes,� Charlotte said at the hearing, with one working lung able to push enough air through her voice box. “I think it would be the best place possible for me to go.�

In limbo

While waiting to go into the courtroom, Charlotte spoke with a Post-Dispatch reporter. The Whites did not want to comment but said Charlotte could tell her story.

When Charlotte was almost 2, she got pneumococcal meningitis, an infection of the membranes covering the brain and spinal cord that ended up affecting her kidneys. While her body grew, her kidneys didn’t, she said.

The organs eventually stopped working in May 2020. Her blood pressure spiked, causing her to have a seizure. That’s when she first went to Cardinal Glennon, began dialysis and was placed on the transplant list.

Her mom was abusive and often threatened to kill herself, Charlotte said. The home she shared with her mother lacked air-conditioning and meals were TV dinners, which exacerbated her health problems. Her father had died.

In May 2022, Charlotte called Collinsville police about her mom, which a police report and a child neglect charge confirm.

The police report showed the inside of the home was covered in trash, animal feces, urine, rotting food and bugs. The toilets did not work. The refrigerator was off. The thermostat read 90 degrees.

The state took Charlotte into protective custody. Because of the treatment she requires, she was taken to the hospital, and she’s been there ever since.

With no plans on where she would be placed and whether she’d be able to adhere to post-operative protocols, Charlotte says the hospital changed her status on the transplant list to “temporarily inactive,� designed for patients who are not immediately eligible for transplant due to factors that would decrease the chances of success.

In May, it came time to renew her spot on the list. But with still no firm living plans in place, the hospital had to take her off the list entirely, she said. Renewing also required a lengthy process of updating her medical conditions.

A hospital’s transplant team must order medical tests and lab work to evaluate patients for transplant and ensure a good organ match. Other tests consider patients’ psychological readiness and social support.

The team decides whether patients meet the criteria to be added to the transplant list and become a transplant candidate at its hospital. Each hospital conducts its own evaluation. The discretion has left teams open to criticism that they cherry-pick candidates. Hospital transplant centers are scored by various state and federal agencies on survival rates for transplants. The Scientific Registry of Transplant Recipients also maintains a public database on outcomes.

Charlotte has been left in limbo, with taxpayers footing the hospital bill. She spends her Mondays, Wednesdays and Fridays getting dialysis, which takes four to five hours. She watches movies. Her older sister, Karma Dubois, 19, of Caseyville, visits when she can.

“There’s not much to do,� Charlotte said. “I do my makeup a lot.�

A teacher works with her for about an hour a day, she said. Someone takes her outside about once a week. She has to wear an ankle monitor.

When asked what she feels like she’s missed out on having to be in the hospital, she was confused by the question. Her sister prompted her — like school, making friends, going out?

“Yeah, all of that,� Charlotte said. “Sorry, I’m bad at the ‘feeling’ questions.�

She’s been forced to stay strong, focus on survival. The longer she is on dialysis, she said, the harder it is on her heart.

“If I have to get dialysis any longer, I will die,� she said. “It’s either death by kidney failure or death by heart disease.�

‘Due diligence’ and ‘red tape’

A reporter learned about Charlotte’s plight from worried friend Lori Browning, 67, of Belleville, in an email to the Post-Dispatch. Browning met Charlotte a few years ago as a volunteer with the Make-A-Wish Foundation and started visiting her after learning she was in the hospital.

“When it hit the one-year point in the hospital — that has just weighed so heavily on her,� Browning said. “She’s deteriorating from having to stay in there so long and live in unnatural conditions.�

Tarczan at DCFS said she was limited in what she could say about the case but blamed the delay on the unique challenges posed by Charlotte’s health needs. Charlotte needed to be near medical centers in ÃÛÑ¿´«Ã½ or Chicago and required certain living conditions, reducing group and foster home options.

Charlotte’s grandmother initially thought she might be able to care for her, but that fell through. When the Whites’ interest intensified, case workers needed to make sure they were a good fit, Tarczan said. The Whites have six other children at home with special needs whom they’ve adopted.

Working through the different rules, standards and procedures of child service agencies in two different states also bogged down the process.

“Nothing moves as quickly as we want it to move,� Tarczan said. “At the same time, we really do have the best interest of the child in mind. We do have to do due diligence and follow the procedures.�

Rousseau, Charlotte’s court-appointed attorney, largely blamed the latest delay on the numerous administrative hurdles involved when transferring care of a medically complex child between two state child service agencies.

As a way to bypass all the red tape, Rousseau said he suggested seeing if Charlotte’s mom — in an assisted-living facility in Colorado — would consent to granting guardianship to the Whites.

The Whites were willing to put Charlotte on their health insurance and care for her without any assistance from the state, he said, which was key.

DCFS did not object to his plan. A probate court judge then just needed to decide if it was in Charlotte’s best interest.

‘Where can we do better?’

With Charlotte’s mom’s consent and no objections, the judge’s approval came quickly on June 22. The hearing took about 10 minutes.

Charlotte walked out of the courtroom into hugs and congratulations. She’ll leave the hospital after her dialysis treatment on July 7, when her care will transfer to the Indianapolis area.

She asked if the Whites could be the ones to drive her back to the hospital.

It would be the only time the Post-Dispatch would get to talk at any length with Charlotte, whose state-issued cellphone doesn’t work in the hospital. A reporter spoke with Charlotte briefly at the hospital after the court hearing, but staff members directed the reporter to leave.

Charlotte did manage to tell the reporter what she hopes her life will be like after leaving ÃÛÑ¿´«Ã½. “My hope is to get back on the transplant list,â€� she said.

Rousseau later described the Whites as a miracle.

“Without the White family, she’d still be in hospital,� he said.

Tarczan said that DCFS leadership is reviewing cases like Charlotte’s and determining what policy changes are needed.

“We will examine all of this at the highest levels, and go back and say, ‘Where can we do better? Where can we improve?’� she said. “This isn’t going to be put in a file and locked away and never looked at again.�

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