In June of 2016, then three-month-old Mirela was admitted to Blythedale’s Infant & Toddler Unit for medical management of her complex condition, and potentially for ventilator weaning. She was diagnosed with pulmonary hypertension and chronic respiratory failure, as well as congenital hypotonia, a genetic abnormality which causes decreased muscle tone. Mirela was treated in the Hospital’s post-NICU program for several months before her parents learned she was a candidate for transfer to the new Steven and Alexandra Cohen Pediatric Long Term Care Pavilion at Blythedale Children’s Hospital. “It’s like there was a light at the end of tunnel.” said Marie Grace Antonio, Mirela’s mom, upon hearing that Mirela was ready for transfer. Mirela’s father, Joseph, agreed, saying, “Coming here is like being part of a trusted family because she is no longer a patient, but a resident.”
Both parents are motivated and engaged participants in Blythedale’s patient-family education program. This customized education not only help provide the foundation for care coordination, but also boosts confidence in preparing parents for potential discharge in the future. “Suctioning and changing the trach, doing the feedings using the g-tube, and even positioning her; they teach us everything.” said Marie Grace Antonio.
According to Dr. Tracy Lawrence-Black, a Neonatal Medicine specialist and attending physician for The Steven and Alexandra Cohen Pediatric Long Term Care Pavilion at Blythedale, “No child is assumed to be just as they are.”
“We want to make it so they can be with their families and part of their communities, and if that isn’t possible, then this is a place where we provide a stimulating and nurturing environment that gives children who might not otherwise have those opportunities, a place to call home,” said Dr. Lawrence-Black.
Mirela is just one of the 24 residents who experiences this unique care model firsthand as she receives extensive occupational, physical, speech and feeding therapies on a daily basis. The combination of these therapies has allowed her to transform from a medically unstable, immobile, fragile baby to a curious and stronger toddler. “Over the past year, she has continued to delight us all in the progress she has made. She is now able to be off the ventilator for 14 to 16 hours at a time. She is rolling in the bed. She is bringing her head to mid line, holding toes, very socially engaged and aware of the world,” said Dr. Lawrence-Black.
Anita Marandi, an occupational therapist at Blythedale, has treated Mirela over the past few months in The Steven and Alexandra Cohen Pediatric Long Term Care Pavilion. Contributing to and seeing firsthand how the toddler has reached many of her goals, Marandi said it has been rewarding, but there’s still more to accomplish. “There are a lot of things that are out of Mirela’s control, medically speaking, and I think being able to show her that she has the power to interact with her environment and participate in things, is really important.” Marandi said. “I want her to be able to make her own choices.”
Giving Mirela a voice to make those choices has been what Blythedale speech-language pathologist, Sharon Prouty, has been working on. Utilizing a Passy-Muir valve to help the 17-month old speak, has been a main focus in recent therapies, as well as introducing the tastes and smells of food; all of which advance Mirela to the next steps in development. “Voice, sign language or pictures… they all help her communicate and help her learn how take in food and see it’s something pleasurable.”
“She’s a miracle baby who’s strong and has endured a lot for her age,” said Marie Grace Antonio, as Mirela tried to wriggle free from her mother’s loving grasp. The family prepared to go for a walk outside, securing Mirela safely in her adaptive stroller fitted with a portable ventilator and pulse oximeter.
“As a couple, she’s our first baby and she is our life,” said Joseph Antonio. “Most parents have dreams for their child to be an athlete, a lawyer or a doctor, but for us, we only wish for normalcy for our child. When you combine tender loving care with science, it’s just amazing. It’s Blythedale.”
To read more about Blythedale's unique long-term care model, please read Pediatric Long Term Care... and Going Home, by Blythedale President & CEO Larry Levine.