Montgomery child needs liver surgery for Abernethy malformation

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Anne Marie Calligas has Abernethy malformation sort 1b, leaving her with contaminated blood; Household is going through a protracted keep in Illinois for surgical procedures

Since her start, hospital life has been second nature for tiny however robust Anne Marie Calligas. In her five-and-a-half years, this Montgomery lady has been poked, prodded and examined a lot that she thinks of needles as playthings. 

“She’ll stroll round with the toy factor that’s supposed be giving any individual a shot,” mentioned her mother, Catherine Calligas. “She’ll go as much as her sister (Isabel) and begin saying, ‘Needle! Needle! Needle!’”

The youngest of the 2 women by a couple of 12 months, Anne Marie could be very humorous, exuberant, and isn’t shy in any respect. Her mom describes her as a “pistol,” and mentioned she’s the alpha of the sisters. 

Anne Marie can be a real rarity on a worldwide scale. 

In June, she was identified as certainly one of just a few dozen folks worldwide since 1793 to have Abernethy malformation type 1b. She was born and not using a portal vein in her liver. Anne Marie’s situation implies that unfiltered blood is bypassing her liver and going straight into her coronary heart, which is creating dangerously excessive ammonia ranges in her system, amongst different issues. 

As ailing as Anne Marie is — and she or he is going through the potential for liver failure — Calligas mentioned the lady is the one doing one of the best of their household proper now. It’s a worrying state of affairs as Calligas and her husband, Louis, plan a visit and long-term keep in Chicago this month that might save and probably vastly enhance their lady’s life. 

The trail to Ann & Robert H. Lurie Children’s Hospital is sophisticated. They’ve checked out getting assist from a nonprofit group to fly there, however the household might take a industrial flight. The date to go away continues to be somewhat up within the air. 

“We thought we have been going to be leaving (Aug. 3) for Chicago,” Calligas mentioned. As a substitute, they received bumped again on the hospital’s schedule. “(The hospital) floated the dates of Aug. 19 or Aug. 31 as potential ones for the place we may come up there.”  

When the journey is about, Anne Marie has a bag along with her identify on it able to go. It is a reward from longtime household pal Lauren Kirkland. 

“(Anne Marie) opened the bag and she or he simply mentioned, ‘Oh, I find it irresistible!” Calligas mentioned. “She mentioned, ‘Mother, I can’t wait to go to Chicago with you.’”

Kirkland helps the household by establishing the “Anne Marie’s Medical Fund” GoFundMe page, which has raised greater than $33,000 to date. 

“I’ve simply all the time identified (Calligas). She’s form of like my sixth baby,” mentioned Kirkland. 

A brilliant physician 

If anybody wanted a superhero proper now, it’s Anne Marie. Happily, she’s discovered one who’s an professional in Abernethy malformation. 

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

That’s the spot on nickname of Dr. Riccardo A. Superina, the pinnacle of transplant surgical procedure at Ann & Robert H. Lurie Youngsters’s Hospital. 

Calligas found Superina whereas doing analysis into her daughter’s situation. One morning at about 2 a.m., she wrote him a protracted e mail explaining Anne Marie’s medical historical past, and despatched it to the hospital in hopes that he’d see it. Surprisingly, he wrote again to her that afternoon. 

“He mentioned he thought he may right the issue,” Calligas mentioned. 

In an informational video from the hospital, Superina mentioned sufferers are sometimes referred to him as a result of it’s thought they could want a liver transplant. 

“The fact of the actual fact is that many youngsters which can be despatched to me can have options aside from transplantation for his or her issues,” Superina mentioned.

The way in which Calligas understands it, the purpose is to construct Anne Marie a brand new portal vein by working with different blood vessels which can be already in her liver. That’s the end result Anne Maria’s dad and mom are hoping for, relatively than risking potential rejection from a liver transplant.

Virus considerations

Alabama’s fame as a coronavirus sizzling spot will observe Anne Marie and household to Chicago. Alabama is among the many states Chicago has listed in a travel quarantine list

In the event that they fly there commercially, they’re going to be on additional guard in opposition to the virus with Anne Marie. In her situation, the virus may kill her. 

Whereas the Montgomery household would in any other case need to quarantine themselves instantly for 14 days after arriving in Chicago, town has an exemption for journey for medical care.

“Initially, once we rise up there, (Anne Marie) will need to have a COVID-19 check,” Calligas mentioned. “So long as it comes again unfavorable, they’ll admit her.” 

Coronavirus situations have restricted entry to sufferers in hospitals in every single place, particularly in ICU settings like the place Anne Marie can be. 

Calligas mentioned her understanding is that she or her husband can be allowed to go to Anne Marie separately, whereas the opposite stayed with Isabel.

One “what if” worry Calligas has is what would occur if she or her husband have been to catch the virus whereas in Chicago, after Anne Marie was admitted. 

Chicago housing

The household has been advised they’re not allowed to remain on the Ronald McDonald Home in Chicago, which usually gives free housing and meals to households of hospital sufferers in long run care conditions.

In an emailed response to a query about this from the Advertiser, Ronald McDonald Home Charities of Chicagoland and Northwest Indiana mentioned they might not focus on particular household instances with out permission from the household. 

“Nonetheless, we will share that, in alignment with the Metropolis of Chicago, our medical companions, and the RMHC International Program Tips in place throughout COVID-19 {that a} household arriving in Chicago from a state listed on the Chicago journey ban would require a unfavorable COVID-19 check and/or a quarantine of 14 days previous to staying at any of our Chicagoland Ronald McDonald Homes,” wrote Ruth-Anne Renaud, vice chairman of selling and communications. “As well as, due to Ronald McDonald Home operation restrictions, sadly we aren’t permitting properly siblings to remain at a Ronald McDonald Home at the moment.”

Happily, a pal within the lodge enterprise has been in a position to get them a reduced fee for a room. However even at a reduction, it should add up.

“The hospital is mainly on the Magnificent Mile,” Calligas mentioned. “It’s actually in like the most costly a part of town.”

Anne Marie would require a lot testing and two or three surgical procedures. They will not know if she wants the third surgical procedure till they get completed with the primary two.

“We could possibly be there anyplace from six weeks to a few or 4 months, relying on any form of issues that she may need from these surgical procedures,” Calligas mentioned. 

Youth to prognosis

Calligas mentioned she had a really sophisticated being pregnant with Anne Marie.

“There was the chance that she was going to be stillborn,” Calligas mentioned. 

As a result of she was untimely by about two months, Anne Marie spent her early days within the Neonatal Intensive Care Unit (NICU) of Montgomery’s Baptist Medical Heart East. 

“She had some congenital coronary heart defects and hypertension, kidney issues and stuff like that,” Calligas mentioned. 

Anne Marie additionally had a grade Three intraventricular hemorrhage — bleeding across the ventricles within the mind — whereas within the NICU. 

Anne Marie has all the time been sickly and underweight — she’s presently solely 26 kilos.

“My older daughter may catch a chilly, after which Anne Marie will get it,” Calligas. “However when Anne Marie will get it, it lasts for like two weeks and we’ll find yourself within the hospital as a result of she wants oxygen.” 

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

As soon as, she additionally needed to be flown in to the hospital due to a two-hour seizure. 

She has additionally produced anomalies that led to incorrect diagnoses. One instance is when docs thought Anne Marie had meningitis as a result of she had all of the signs, however checks from two spinal faucets have been unfavorable. 

Anne Marie, who’s developmentally and neurologically delayed, is hyperactive and may’t give attention to issues for greater than 5 minutes, her mother mentioned. It’s believed that could possibly be the results of her excessive ammonia ranges. 

“She will’t keep in mind issues,” Calligas mentioned. “If you happen to tried to learn her a narrative, she would don’t know what you have been studying her.”

She has been in speech and feeding remedy for about three years. Calligas mentioned the feeding remedy is what by accident led to the invention of Anne Marie’s Abernethy malformation.

After one specific spherical of main blood checks in early March, they discovered that Anne Marie’s blood work from her liver seemed unhealthy. Three weeks later, in April it was worse.

  In the meantime, clinics throughout the realm have been closing due to the virus outbreak. The household needed to wait till Might 29 to get Anne Marie in for an ultrasound. 

“After they put the wand on her liver, it didn’t look the best way it ought to with the blood circulate. It form of was simply this huge white splotch,” Calligas mentioned.

In mid-June, they went in for a CT scan, and docs found the dearth of a portal vein.

“I’ve a brother-in-law, a cousin and my baby’s godfather who’re docs,” Calligas mentioned. “And once I advised them what she was identified with (Abernethy malformation), all of them mentioned, ‘What’s that?’”

Reaching out

Through the years, laboring underneath the thought of different diagnoses Anne Marie had acquired, Calligas has reached out to assist teams with 1000’s and even thousands and thousands of followers. 

As uncommon as Abernethy malformation is, there are different present instances like Anne Marie’s, and different dad and mom like Calligas searching for solutions as properly.

In her many hours looking out on-line, Calligas discovered them in a personal Fb group named for the situation. The Abernethy Malformation group solely has 47 members from all around the world. 

“I met a mom, her identify is Natalie, from Australia,” mentioned Calligas. “Her little lady Grace is about 9 months youthful than Anne Marie. She had this completed in Chicago in the summertime of 2019. She helped me by rather a lot and advised me what to anticipate.”

One other mom mentioned she’d been referred to Ann & Robert H. Lurie Youngsters’s Hospital by the celebrated Johns Hopkins Hospital in Baltimore, Maryland. 

Wanting forward

Due to work as an legal professional with the agency Balch and Bingham, Calligas’ husband must trip between Montgomery and Chicago through the hospital keep. 

Calligas is a preschool instructor at First United Methodist’s First Faculty however mentioned she gained’t be capable to return to work this 12 months. 

They’ve shielded Isabel from a lot of the particulars surrounding Anne Marie’s situation and the upcoming surgical procedures. 

“(Isabel) doesn’t know the way extreme it’s this time,” Calligas mentioned. 

Even after surgical procedure is accomplished and Anne Marie is discharged, it gained’t be the tip of remedies, flights and stays in Chicago. 

“I believe it’s as soon as each three months we now have to fly again to Chicago for imaging of her liver,” mentioned Calligas, who added that Anne Marie must be on blood thinners for a 12 months. 

Tips on how to assist

To assist with bills, the “Anne Marie’s Medical Fund” has been arrange on gofundme.com with a purpose of $50,000. Up to now, donors have supplied simply over $33,000.

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

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

Learn or Share this story: https://www.montgomeryadvertiser.com/story/information/2020/08/11/montgomery-child-needs-liver-surgery-abernethy-malformation/3296769001/

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