2-year-old who spent 694 days at the hospital celebrates first Christmas at home
After a long, difficult journey with complex congenital heart disease, Valentina is making new memories with her family.
During her first two years of life, Valentina celebrated Christmas, and every other holiday, inside of a hospital room.
She was intubated and recovering from heart surgery as a baby on Dec. 25, 2019. A year later, still hospitalized and under COVID-19 restrictions, she received gifts from nurses, got a virtual Santa visit through an iPad at bedside and waved to her two sisters through FaceTime.
But this year will be different.
This year, Valentina will wake up Christmas morning in her own bed in her floral-themed pink room, open presents under the Christmas tree with her siblings and experience first-time holiday memories with her family.
“We are going to do everything we can – drive around to see Christmas lights, visit Santa, watch Christmas movies on the couch together – all the things kids look forward to this time of year that we don’t take for granted now,” said her mom Francesca Garnetti of Riverview, Michigan
“It’s just going to be so amazing to be outside the hospital and together as a family, watching my girls experience this day together and celebrating all of the love and happiness.”
Holiday traditions are among many new milestones for the 2 ½ year old, brown-eyed toddler who was born at University of Michigan Health C.S. Mott Children’s Hospital where she stayed almost 700 days for severe congenital heart complications since birth.
Four open-heart surgeries before age 2
Valentina was prenatally diagnosed with hypoplastic left heart syndrome, sometimes referred to as “half a heart,” which leaves the left side of the heart critically underdeveloped and too small to perform its job of providing blood flow to the entire body.
Garnetti was referred to the Congenital Heart Center at Mott where Valentina was born in May, 2019 and underwent four open heart surgeries.
But her heart condition was extremely complex, and she remained too sick to go home.
The Mott pediatric cardiothoracic intensive care unit, and the nurses, doctors, physical therapists, child life specialists and other staff she saw there, became Valentina’s whole world.
“Mott was the only home she knew. And everyone there became her family,” Garnetti said.
She loved play time with all of her primary nurses and Child Life teams but would get a little grouchy with the physical therapists who “made her work,” her mom says. Among favorite moments – when familiar faces from the Environmental Services team would come clean her room and dance to make her smile.
One nurse, Liana Maffezzoli B.S.N., R.N., was even named Valentina’s godmother.
“These people are so special to her and to me. She truly loves them,” Garnetti said. “They were everything to us during that time. They never gave up on Valentina.”
It was a mutual admiration.
"Valentina continues to inspire us with her strength, resilience and joyfulness,” said Mott pediatric cardiologist Mary Olive, M.D.
“She had an exceptionally difficult journey in her first two years of life but seeing her thriving at home makes those hard times a distant memory. She is part of our congenital heart team family, and we remain committed to caring for her.
“We’re so happy to see her enjoying time with her family at home.”
But there were touch and go moments along the way and times when Garnetti was faced with the worst-case possibility.
“There were days we weren’t sure she’d even have a future outside the hospital and taking it day by day. It was terrifying,” Garnetti said.
Going home for the first time
But on March 24, 2021, the day finally came.
At 22 months old, Valentina said goodbye to her ICU room, with her care teams lined up along the hallways to clap and cheer for a celebratory sendoff as she was wheeled out of the building.
“I felt every emotion you could possibly think of – she’d spent her entire life at the hospital with people she loved and who were always there to take care of her. There was overwhelming happiness, but it was also so scary,” Garnetti said. “I was worried about being able to take as good care of her at home.”
The milestone put Valentina in the national spotlight, covered by news stations across the country, including Good Morning America.
There have been setbacks since then, including a couple of brief hospital stays from complications and a rhinovirus infection. She recently had another surgery for her airway and continues to rely on a feeding and oxygen tubes.
And while there may still be a long road ahead, her mom says she’s soaking up every new moment.
“She’s super sassy but honestly the happiest, most joyful, smiley little girl,” her mom said. “She looks at everything with such awe. The whole world was new for her.”
Among things that make her smile – baby dolls, dancing to songs from “Trolls” and all things Moana. But she lights up most when she’s with sisters Gianna, 5, and Adriana, 1. While their picture was in her hospital room, she only ever experienced brief five-to-10-minute interactions with them before coming home.
“What brings me the most joy is watching her play with her sisters, reading books to each other, smiling, just being together,” Garnetti said.
In her hospital life, the biggest outings were stroller walks in the hallways. But Valentina has since discovered how much she loves splashing around in a kiddie pool with her sisters and playing outside in her yard. She also had a real birthday party – with a candy theme of “2 Sweet” with close family – and experienced her first big holiday, Thanksgiving, at home.
“We’re not sure what the future looks like, but we’re just so appreciative of our time together right now,” Garnetti said.
“We are grateful that she got the best care at the most phenomenal hospital in the world, and now we have these things to look forward to after missing out on so much. It means everything to me.”