After Three Open Heart Surgeries, Baby Amilia Continues to Fight

| February 2, 2023

Screenshot at Jan 31 13-25-36PITTSBURGH, Pa. (EYT) — Amy Nickerson was pregnant with her daughter, Amilia Jackson, when she received the word that her unborn child was diagnosed with hypoplastic left heart syndrome.

Hypoplastic left heart syndrome is a heart defect that affects normal blood flow through the heart.

Amilia was born on June 1, 2022, at West Penn Hospital, in Pittsburgh, but on June 2 baby Amilia was transported to Children’s Hospital in Pittsburgh where she was stabilized. On June 8, at just 8 days old, she had her first open heart surgery. The surgery was successful and Amilia was able to go home to Clarion for the first time.

While at home, Amilia’s two brothers, Hayden 12 and Teigan 5, were able to meet their little sister for the first time. The family was able to be together for a month before Amilia needed to be back at the hospital.

Amy Nickerson and her children (left to right): Teigan, Amilia and Hayden.

Amy Nickerson and her children (left to right): Teigan, Amilia, and Hayden

Amilia and her mother journeyed back and forth between home and hospital stays for procedures until October 25th where Amilia had a planned procedure.

“They were going to make her a biventricular, but that was a failure,” said Nickerson. “Her body rejected it.”

Later that night, doctors called Nickerson at 11:30 p.m. and told her that Amilia went into cardiac arrest. Amilia was put on life support until she successfully came off of it four days later.

Since then, Amilia has had multiple other health-related diagnoses, another cardiac arrest, on and off life support, was placed on a ventilator, battled illness, and overcame surgeries despite her health impairments.

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“On top of all of this, she also has down syndrome. So with it everything is much smaller, runs differently than ours, muscles are more weak and she never got the chance to build any muscle due to being down (syndrome) with surgeries. It makes everything higher risk for her,” said Nickerson.

Amilia is currently hospitalized at the Cardiac ICU in Children’s Hospital, in Pittsburgh. So far, she has gone through three open-heart surgeries with a fourth expected when she turns two or three years old.

“As her body grows, she is going to outgrow everything they (doctors) do.”

Since the failed operation on October 25, Amilia and her mother have been together at Children’s Hospital every day excluding visits for the holidays and nighttime calls and facetimes with her young sons where I-miss-yous and tears are shared.

Amilia’s father, Carl Jackson, is in the Army and currently deployed in Texas for a year.

“I update him every day with what’s going on. He’s financially helping out,” explained Nickerson.

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Nickerson says that prayer is the only thing she asks of others.

“Prayer is what’s getting us through all of this. I know there are prayer warriors out there. That’s what’s going around Facebook and so many people I don’t even know, who are reaching out to me, and I’m just appreciative of it all. It helps for the gloomy days. Just keep in the faith.”

See Amilia’s documented journey on Facebook here.

If you’d like to monetarily assist the family, you may give here.


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