She needs a portal to live: Montgomery child's rare condition to be treated in Chicago

Anne Marie Calligas has Abernethy malformation type 1b, leaving her with contaminated blood; Family is facing a long stay in Illinois for surgeries

Shannon Heupel
Montgomery Advertiser

Since her birth, hospital life has been second nature for tiny but tough Anne Marie Calligas. In her five-and-a-half years, this Montgomery girl has been poked, prodded and tested so much that she thinks of needles as playthings. 

“She’ll walk around with the toy thing that’s supposed be giving somebody a shot,” said her mom, Catherine Calligas. “She’ll go up to her sister (Isabel) and start saying, ‘Needle! Needle! Needle!’”

The youngest of the two girls by about a year, Anne Marie is very funny, exuberant, and isn’t shy at all. Her mother describes her as a “pistol,” and said she’s the alpha of the sisters. 

Anne Marie is also a true rarity on a global scale. 

Anne Marie Calligas has a extremely rare condition called Abernethy malformation type 1b, and doesn't have a portal vein from her liver.

In June, she was diagnosed as one of only a few dozen people worldwide since 1793 to have Abernethy malformation type 1b. She was born without a portal vein in her liver. Anne Marie’s condition means that unfiltered blood is bypassing her liver and going directly into her heart, which is creating dangerously high ammonia levels in her system, among other things. 

As ill as Anne Marie is — and she is facing the possibility of liver failure — Calligas said the girl is the one doing the best in their family right now. It’s a stressful situation as Calligas and her husband, Louis, plan a trip and long-term stay in Chicago this month that could save and potentially vastly improve their girl’s life. 

The path to Ann & Robert H. Lurie Children’s Hospital is complicated. They’ve looked at getting help from a nonprofit group to fly there, but the family may take a commercial flight. The date to leave is still a little up in the air. 

Anne Marie Calligas, right, gives her big sister Isabel Calligas a kiss.

“We thought we were going to be leaving (Aug. 3) for Chicago,” Calligas said. Instead, they got bumped back on the hospital’s schedule. “(The hospital) floated the dates of Aug. 19 or Aug. 31 as possible ones for where we could come up there.”  

When the trip is set, Anne Marie has a bag with her name on it ready to go. It's a gift from longtime family friend Lauren Kirkland. 

“(Anne Marie) opened the bag and she just said, ‘Oh, I love it!” Calligas said. “She said, ‘Mom, I can’t wait to go to Chicago with you.’”

Kirkland is helping the family by setting up the “Anne Marie’s Medical Fund” GoFundMe page, which has raised more than $33,000 so far. 

“I’ve just always known (Calligas). She’s kind of like my sixth child,” said Kirkland. 

A super doctor 

If anyone needed a superhero right now, it’s Anne Marie. Fortunately, she’s found one who is an expert in Abernethy malformation. 

“We’ve told (Anne Marie) that she’s going Chicago to see Dr. Superman,” Calligas said. 

That’s the spot on nickname of Dr. Riccardo A. Superina, the head of transplant surgery at Ann & Robert H. Lurie Children’s Hospital. 

Calligas discovered Superina while doing research into her daughter’s condition. One morning at about 2 a.m., she wrote him a long email explaining Anne Marie’s medical history, and sent it to the hospital in hopes that he’d see it. Surprisingly, he wrote back to her that afternoon. 

“He said he thought he could correct the problem,” Calligas said. 

Anne Marie Calligas has medical issues, including the rare Abernethy malformation type 1b, which causes blood to bypass her liver and go unfiltered into her heart.

In an informational video from the hospital, Superina said patients are often referred to him because it’s thought they might need a liver transplant. 

“The reality of the fact is that many children that are sent to me can have solutions other than transplantation for their problems,” Superina said.

The way Calligas understands it, the goal is to build Anne Marie a new portal vein by working with other blood vessels that are already in her liver. That’s the outcome Anne Maria’s parents are hoping for, rather than risking possible rejection from a liver transplant.

Virus concerns

Anne Marie Calligas with her mom, Catherine Calligas, and her special bag with her name on it.

Alabama’s reputation as a coronavirus hot spot will follow Anne Marie and family to Chicago. Alabama is among the states Chicago has listed in a travel quarantine list

If they fly there commercially, they'll be on extra guard against the virus with Anne Marie. In her condition, the virus could kill her. 

While the Montgomery family would otherwise have to quarantine themselves immediately for 14 days after arriving in Chicago, the city has an exemption for travel for medical care.

“Initially, when we get up there, (Anne Marie) will have to have a COVID-19 test,” Calligas said. “As long as it comes back negative, they’ll admit her.” 

Coronavirus conditions have limited access to patients in hospitals everywhere, especially in ICU settings like where Anne Marie will be. 

Calligas said her understanding is that she or her husband would be allowed to visit Anne Marie one at a time, while the other stayed with Isabel.

One “what if” fear Calligas has is what would happen if she or her husband were to catch the virus while in Chicago, after Anne Marie was admitted. 

Chicago housing

Louis and Catherine Calligas with their daughters Anne Marie, left, and Isabel.

The family has been told they’re not allowed to stay at the Ronald McDonald House in Chicago, which normally offers free housing and meals to families of hospital patients in long term care situations.

In an emailed response to a question about this from the Advertiser, Ronald McDonald House Charities of Chicagoland and Northwest Indiana said they could not discuss specific family cases without permission from the family. 

“However, we can share that, in alignment with the City of Chicago, our medical partners, and the RMHC Global Program Guidelines in place during COVID-19 that a family arriving in Chicago from a state listed on the Chicago travel ban would require a negative COVID-19 test and/or a quarantine of 14 days prior to staying at any of our Chicagoland Ronald McDonald Houses,” wrote Ruth-Anne Renaud, vice president of marketing and communications. “In addition, because of Ronald McDonald House operation restrictions, sadly we are not allowing well siblings to stay at a Ronald McDonald House at this time.”

Fortunately, a friend in the hotel business has been able to get them a discounted rate for a room. But even at a discount, it will add up.

“The hospital is basically on the Magnificent Mile,” Calligas said. “It’s literally in like the most expensive part of the city.”

Anne Marie will require much testing and two or three surgeries. They won't know if she needs the third surgery until they get done with the first two.

“We could be there anywhere from six weeks to three or four months, depending on any kind of complications that she might have from these surgeries,” Calligas said. 

Early life to diagnosis

Anne Marie Calligas was born premature.

Calligas said she had a very complicated pregnancy with Anne Marie.

“There was the possibility that she was going to be stillborn," Calligas said. 

Because she was premature by about two months, Anne Marie spent her early days in the Neonatal Intensive Care Unit (NICU) of Montgomery’s Baptist Medical Center East. 

“She had some congenital heart defects and hypertension, kidney problems and stuff like that,” Calligas said. 

Anne Marie also had a grade 3 intraventricular hemorrhage — bleeding around the ventricles in the brain — while in the NICU. 

Anne Marie Calligas, right, gets a hug from her big sister Isabel Calligas.

Anne Marie has always been sickly and underweight — she’s currently only 26 pounds.

“My older daughter might catch a cold, and then Anne Marie gets it,” Calligas. “But when Anne Marie gets it, it lasts for like two weeks and we’ll end up in the hospital because she needs oxygen.” 

In 2017, Anne Marie ran a continuous fever for 30 days. 

Once, she also had to be flown in to the hospital because of a two-hour seizure. 

She has also produced anomalies that led to incorrect diagnoses. One example is when doctors thought Anne Marie had meningitis because she had all the symptoms, but tests from two spinal taps were negative. 

Anne Marie, who is developmentally and neurologically delayed, is hyperactive and can’t focus on things for more than five minutes, her mom said. It’s believed that could be the result of her high ammonia levels. 

Anne Marie Calligas, right, with her big sister Isabel Calligas.

“She can’t remember things,” Calligas said. “If you tried to read her a story, she would have no idea what you were reading her.”

She has been in speech and feeding therapy for about three years. Calligas said the feeding therapy is what accidentally led to the discovery of Anne Marie’s Abernethy malformation.

After one particular round of major blood tests in early March, they found that Anne Marie’s blood work from her liver looked bad. Three weeks later, in April it was worse.

  Meanwhile, clinics across the area were closing because of the virus outbreak. The family had to wait until May 29 to get Anne Marie in for an ultrasound. 

“When they put the wand on her liver, it didn’t look the way it should with the blood flow. It kind of was just this big white splotch,” Calligas said.

In mid-June, they went in for a CT scan, and doctors discovered the lack of a portal vein.

“I have a brother-in-law, a cousin and my child’s godfather who are doctors,” Calligas said. “And when I told them what she was diagnosed with (Abernethy malformation), they all said, ‘What is that?’”

Reaching out

Over the years, laboring under the idea of other diagnoses Anne Marie had received, Calligas has reached out to support groups with thousands or even millions of followers. 

As rare as Abernethy malformation is, there are other current cases like Anne Marie’s, and other parents like Calligas looking for answers as well.

In her many hours searching online, Calligas found them in a private Facebook group named for the condition. The Abernethy Malformation group only has 47 members from all over the world. 

“I met a mother, her name is Natalie, from Australia,” said Calligas. “Her little girl Grace is about nine months younger than Anne Marie. She had this done in Chicago in the summer of 2019. She helped me through a lot and told me what to expect.”

Another mother said she’d been referred to Ann & Robert H. Lurie Children’s Hospital by the prestigious Johns Hopkins Hospital in Baltimore, Maryland. 

Looking ahead

Anne Marie Calligas gets ready to blow out her 5th birthday candle.

Because of work as an attorney with the firm Balch and Bingham, Calligas’ husband would have to go back and forth between Montgomery and Chicago during the hospital stay. 

Calligas is a preschool teacher at First United Methodist’s First School but said she won’t be able to go back to work this year. 

They’ve shielded Isabel from most of the details surrounding Anne Marie’s condition and the upcoming surgeries. 

“(Isabel) doesn’t know how severe it is this time,” Calligas said. 

Even after surgery is completed and Anne Marie is discharged, it won’t be the end of treatments, flights and stays in Chicago. 

“I think it’s once every three months we have to fly back to Chicago for imaging of her liver,” said Calligas, who added that Anne Marie would have to be on blood thinners for a year. 

Anne Marie Calligas, right, with her big sister Isabel Calligas.

How to help

To help with expenses, the “Anne Marie’s Medical Fund” has been set up on gofundme.com with a goal of $50,000. So far, donors have provided just over $33,000.

To donate, visit gofundme.com/f/anne-marie039s-medical-fund.

Contact Montgomery Advertiser reporter Shannon Heupel at sheupel@gannett.com.