Balancing Act: 5-year-old Alabama girl is in Chicago for life-saving surgery. COVID-19 has complicated every step of the way

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Zbigniew Bzdak/Chicago Tribune/TNS

CHICAGO — Anne Marie Calligas was born fighting.

She arrived two months early, after a complicated pregnancy, and spent her first months of life battling congenital heart defects, hypertension, problems with her kidneys and bleeding in her young brain.

Her parents, Catherine and Louis Calligas, and her older sister, Isabel, grew quickly accustomed to the noises and smells and routines of hospitals. Even as Anne Marie aged past infancy and toddlerhood, a common cold could land her in the hospital with breathing problems.

In June, a gastrointestinal specialist diagnosed Anne Marie, now 5 years old, with a disease called Abernethy malformation. It’s an extremely rare vascular anomaly whereby a portal vein is missing in the liver, allowing blood to go straight to Anne Marie’s heart and lungs without the liver doing the important work of processing and filtering it first.

Catherine Calligas reached out to family members and friends who are physicians. None of them had even heard of Abernethy malformation. She turned to Google.

“I basically stayed on my computer for 48 hours straight,” she said.

The Calligas family lives in Montgomery, Alabama. Catherine Calligas’ research kept pointing her to Chicago.

“All you can really find are medical journal articles,” she said. “I noticed a lot of them had either been authored by or referenced Dr. Superina.”

That’s Riccardo Superina, surgical director of the kidney and liver transplant programs at Ann and Robert H. Lurie Children’s Hospital of Chicago. He’s one of a handful of doctors in the world who does the surgery Anne Marie would need to address her condition. Patients have come to him from Australia, Vietnam, all over Europe.

“I stumbled across a YouTube video where the mother of a patient he had back in 2008 livestreamed an interview with him,” Calligas said.

She watched the whole thing. She knew she needed to reach him and tell him about Anne Marie, but she couldn’t find an email address.

“I basically just thought of every possible way his email could be written — if it was R Superina at Lurie or R Superina at Lurie Childrens. Basically I wrote him a very lengthy email and sent it to about nine different email addresses and kind of crossed my fingers that one would be his.”

She sent it at 2 a.m. on a Friday. At 4 p.m. that same Friday, she received his reply.

“I started crying,” Calligas said. “It was very overwhelming. I didn’t know if he would ever even see the email. And for him to email back and say, ‘I think I can fix this. Here’s my office coordinator’s number. Here’s a nurse’s number. Here’s my number. Let’s get this set up,’ it was such a relief. It was surreal.”

Getting it set up was no small thing. Alabama is one of 18 states on Chicago’s quarantine list, meaning the Calligas family would have to quarantine for 14 days upon arriving in the city to prevent the spread of COVID-19.

Exceptions can be made for medical reasons, but Alabama’s designation also meant the family couldn’t stay at a Chicago Ronald McDonald House, which has to follow strict pandemic protocols, including prohibiting siblings from staying on its properties.

Then there was the question of how to get here. Driving, they figured, would take up to 15 hours and require rest stops that could expose them to the virus they’d been so meticulously careful to avoid at home. And where would they park a car in downtown Chicago for six weeks or more?

They opted to fly, wearing masks and face shields and armed with an ample supply of hand sanitizer. A family friend who manages the Sofitel hotel, a half-mile from Lurie, offered them a room at a discounted rate. Friends in Montgomery set up a GoFundMe.

They arrived in Chicago in early August. Anne Marie’s first surgery was Aug. 19. Isabel, 7, was scheduled to start second grade the same week. She hunkered down for remote learning in the hotel room, alongside her dad, who remote works on his laptop.

Anne Marie had a second surgery the following week and has spent the next few weeks slowly recovering, slowly being weaned off various medications, slowly being reintroduced to small amounts of food, doctors carefully monitoring her liver the entire time.

If her bloodwork comes back with the levels doctors are hoping for, she’ll move to the Shirley Ryan AbilityLab in the next few days, where she’ll complete physical therapy and rehabilitation from being hospitalized for so long.

Once she returns to Alabama, she’ll need to come to Chicago every three months or so for checkups.

“We’re going to follow her very closely,” Superina said. “We have to make sure this new portal vein we’ve sort of constructed will stay open. I compare it to a young plant that needs attention for it to grow, otherwise it will shrivel up and die.”

The vein, ideally, continues to grow and supply Anne Marie’s liver with the nutrition, hormones and substances it gets from her gut, Superina said. In return, her liver filters things from her gut that are harmful, particularly to her lungs and brain.

A lot of children with Anne Marie’s condition suffer from attention deficit disorder, learning challenges and behavioral problems, Superina said, because there are chemicals circulating in their bloodstream that cause the brain to misfire. Parents often report significant changes in their children’s ability to function socially and academically after the surgeries.

“It’s not something that’s common knowledge,” Superina said. “Very often parents have been told by local doctors, local surgeons, ‘It’s nothing. You don’t have to worry about it.’ Or, ‘They need a liver transplant.’

“These families are desperate,” he said. “They don’t know what to do. They may have been told for years that kids can live with it or they’ll outgrow it or some nonsense like that. And then they start developing real problems, which are almost inevitable, and then they’re being told they need a liver transplant. So the families are like, ‘What’s going on? I was told for many years there’s nothing wrong. Now all of the sudden they need a liver transplant?’

“I could write a whole book about it,” he said.

Superina is, in fact, working on getting a paper published about it, in order to spread the word to his fellow physicians.

“What’s killing them isn’t the fact that their liver is sick,” he said. “It’s the fact that they’re shunting blood around their liver. If you can redirect the blood flow to the liver, that fixes the problem. It’s a simple enough concept. The problem is executing it, and that’s where the expertise comes in. We have the experience now of 60 or 70 patients from around the world. We can anticipate the problems and we understand the solutions.”

Which is why families seek him out from around the world. I asked if he remembered receiving Catherine Calligas’ email.

“Of course,” he said. “Yeah. She was very eloquent in how she described her daughter’s condition.”

I told him it struck me as remarkably humane, maybe even remarkably rare, for a world renowned specialist to return a mom’s 2 a.m. email.

“I sort of feel like if I hear about someone who’s looking for help, it doesn’t take a lot of time to answer their email and tell them I’d be happy to see them or I can help them or no, they don’t need a transplant,” he said. “I have to do it. You can’t just ignore these people. They come to me and ask for help.”

The Calligas family calls him Dr. Superman.

“The parents are the ones trying to find the solutions,” Superina said. “And eventually they do. It’s a tribute to the relentlessness of parents who want the best for their child, really.”

It is that. Throw a global pandemic in there and that relentlessness stands in even starker relief.

Chicago is pulling for you, Calligas family. It’s an honor to host your young fighter, and we look forward to many healthy returns.

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Join the Heidi Stevens Balancing Act Facebook group, where she continues the conversation around her columns and hosts occasional live chats.

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©2020 Chicago Tribune

Louis and Catherine Calligas walk with their daughters Anne Marie, 5, and Isabel, 7, from their hotel to Lurie Children's Hospital in Chicago on Sept. 24, 2020. - Zbigniew Bzdak/Chicago Tribune/TNS