UPDATE: 3-Year-Old 'Mighty Mia' Moved To PA Children's Hospital

EAST HAVEN, CT — From her first breath, Mia Clementina Simuong has been fighting for her life.

The 3-year-old from East Haven has endured and battled through more in her very few years alive than most do in their lifetimes. After five open-heart surgeries, the diminutive warrior rallies, even when doctors caution against optimism.

It was in late October when, following her latest heart surgery, Mia’s parents — Stefania and Dennis Simuong — had “yet another one of the scariest days of our lives.”

“Hearing the doctor say, 'Your child is very, very sick, let's just pray that she gets through this surgery, and then we can talk about the future' [are] words no parent should ever have to hear!”

Mia was born in April 2017 with heart defects including right dominant AV septal defect with a coarctation as well as Noonan syndrome.

Mia is hospitalized at the NewYork-Presbyterian Morgan Stanley Children’s Hospital in New York City. She's been in the intensive care unit there for more than 60 days. She has undergone myriad surgeries, with the last unsuccessful, but her parents — and Mia — refuse to give up. The Oct. 1 surgery, which was supposed to last around eight hours, took 13 instead; afterward, when she’d been moved to an ICU bed, the room had to be quickly converted into an operating room.

“Unfortunately, after going back to her ICU room, Mia had some complications that resulted in her room being changed into an OR and the doctors had to reopen her chest,” Stefania said. She was intubated.

Twelve days after the initial surgery, she “spiked a fever of 104.7,” which caused her vital signs to drop and, her mother wrote, Mia had a “short period of unresponsiveness.”

“Thankfully the medical staff reacted immediately and within a few hours they were able to get her fever down and all vital signs back to normal,” Stefania wrote. It would take weeks, but Mia again fought and fought; but by Oct. 20, “lots of prayer” were needed. The corrective open-heart surgery had to be undone.

“Mia has been taken back to the OR to undo the surgery she had (the fontan). Mia is so strong and fought so hard these last few days, unfortunately her body could not handle the new changes. Please keep our baby girl in your prayers today. Praying for a miracle.”

Mia is the miracle.

They don’t call her “Mighty Mia” for nothing.

“Mia still has a long recovery road ahead, and we have to discuss what to do in the future because the last surgery didn't work, but for now she just needs to rest and recover, and then we can make a plan,” Stefania wrote in her Facebook blog, "Baby Mia’s Journey."

Stefania has documented the journey and, in nearly all the posts, she's upbeat and positive: cheering her baby on, thanking loved ones for their support, and praising the medical teams who work so hard for her child.

And though it's been a tough road, she summons the strength she needs, something she's been taught by Mia.

"Anyone who knows me, knows all I wanted in life was to be a mother," she said. "Not only did Mia make me a mother, she taught me the value of life and how to fight."

The little student who could

Jessie Tagliamonte is Mia’s teacher at Deer Run School. Mia started her student life as a preschooler at the school’s Integrated Special Education Preschool Program called Little Sea Stars as a remote learner in March, at the height of the beginning of the pandemic. The program is play- and language-based, with typical peer role models integrated into the classroom.

Through the many months of pandemic lockdown, and Mia's own medical trials, she continued learning remotely well into the new school year.

Saying Mia has “touched the hearts of all her educators,” Tagliamonte and Deer Run school social worker Celi Toldeo told Patch that Mia has a “will to learn.”

“Mighty Mia is an amazing little girl; smart and sweet mixed with a little bit of sass,” they said. “Her strength, resilience, determination and charisma is admirable, and her enthusiasm to learn during remote learning has been remarkable. Her will to learn is astounding; always eager to complete work assignments, always eager to attend live-streaming sessions, eager to please and eager to greet her teachers and peers.”

And the educators heaped praise on Mia’s parents.

“Her mother and father are deeply invested in Mia’s education and worked hand in hand” with Tagliamonte.

Many are involved in not only her education but also in supporting her from afar with a blanket of love.

Her art teacher, Cathy McGarry; her speech and language teacher, Michelle Landolfi; her paraprofessional, Barri Shames; school psychologist Amanda Gamble; and Deer Run Principal Laura Cretella joined Toledo, Tagliamonte and her classmates in playing a part to help Mia to succeed educationally while offering their love and encouragement.

And to show Mia just how much she has been loved, they all worked together to create a mountain of get-well cards for the hospitalized preschooler.

“The students at Deer Run School all took great pride in making Mia get well cards,” Tagliamonte said. “Mia is in the thoughts, and hearts of all of Deer Run staff and students. We are all rooting for her and wishing her a very successful recovery.”

Stefania told Patch that the messages from Deer Run have meant so much.

"The love and support, it's almost overwhelming. We are so grateful."

'It's not easy, but we do what we have to do'

When asked how she and her husband and family cope, she said: "It's not easy, but we do what we have to do." And what they endure pales in comparison to the amount of strength their baby girl must summon daily: "She is just amazing."

"People ask all the time how we do it, and the only answer I can think of is, 'We just do.' People ask, 'How are you always smiling and happy?' Well, if I were to show Mia my true feelings, she would feel them, too, and what kind of fight do you have when you're not in a happy place?" Stefania asked rhetorically.

Stefania also points to her husband, her "rock," for helping her stay grounded.

"My husband has been my rock," she said. "Without him, I would really struggle. He keeps me sane, calms me down and reminds me every day what the real meaning of love is."

The couple is grateful that their employers have been supportive as well.

"During COVID times, only one of us is allowed to be in the hospital with Mia. My managers are so understanding and supportive, so I am able to be the one primarily staying with Mia," Stefania said. "My husband also has supportive management that have accommodated his schedule, so he could come to New York on the weekends."

And then there's family — the bedrock for she and Dennis.

"My parents, Rick and Tina Onofrio, will generally drive down with my husband and stay with me for a night to provide company and support while my husband is with my daughter. Dennis' parents, Don and Kim Simuong, will generally come the following day," she explained.

"Aside from our parents and siblings, our extended families and friends are providing calls, texts, cards, love support and prayers on a daily basis," she said. "We wouldn't be where we are today if it wasn't for everyone's continued prayers."

And Mighty Mia's strength and will to live.

When asked if there was a fundraiser for the family, Stefania was not aware of any. She said "prayers are what we need most.

Turns out, a friend has set up a GoFundMe for Mia, Stefania and Dennis, to help support the family. Learn more about how to help here.

Merry Christmas, Mia.

Updated at 9:45 a.m., Thursday, Dec. 10:

Mia has been transferred to the Children's Hospital of Philadelphia, Stefania told Patch. Here's her Baby Mia's Journey post from early Thursday morning.

Updated at 8 a.m., Friday, Dec. 11:

Mia goes in for surgery Friday morning.

Updated at 8:10 p.m., Friday, Dec. 11:

The surgery went well. Now, her family waits "to see if that was enough and what our next move will be."

Check back with Patch for updates on Mia's journey.

GoFundMe is a Patch partner.