Maria's Village

Maria is a six-year-old girl whose family has long awaited her arrival home and it's taken a village to get her there.

Maria was born with arthrogryposis, a rare and complex congenital condition that affects the joints in her upper and lower limbs causing stiffness and limiting her range of motion. The contractures slowed the progression of Maria's growth and as an infant, she required full-time ventilator support. When Maria turned three, her family and medical team saw while her heart and lungs and limbs grew, it was not at the same rate. But the measurable growth opened up new possibilities for the little girl described by all as a "fighter". Maria's medical team at Blythedale Children's Hospital evaluated her condition and determined that it was possible to begin a ventilator-weaning protocol to decrease her reliance on mechanical ventilation.

Maria improved but needed a little more time to become stable before she was ready to go home. Maria's family and medical team chose to transition her care to The Steven and Alexandra Cohen Pediatric Long Term Care Pavilion at Blythedale.

"When they showed me this part of the hospital, I loved that she had a roommate," said Katherine Rivera, Maria's mom. "They were able to bond and they got to go to school together and do activities together."

The Steven and Alexandra Cohen Pediatric Long Term Care Pavilion is a unique 24-bed facility dedicated to the highly specialized needs of infants and children who require extended medical care and rehabilitation. The Pavilion, which opened in 2016, serves children with complex medical needs, including those who require a longer period of time to be weaned from the ventilator, and premature infants with feeding difficulties, congenital conditions or neurological disorders. Children in the Pediatric Long Term Care Unit have access to education through the on-site Mount Pleasant-Blythedale School and recreational programming on evenings, weekends and holidays.

"They are a group of tough - medically fragile - but tough kids," said Catherine Imperatrice, L.M.S.W.,  the social worker for The Steven and Alexandra Cohen Pediatric Long Term Care Pavilion. "For these children to be with us, it just speaks to their abilities, not their inabilities."

Through therapies including physical, occupational and speech, Maria continued to improve and become more stable. Now, Maria only requires ventilator support at night while she sleeps. In order to bring Maria home, her family learned how to care for her through Blythedale's Parent and Family Education program. To care for Maria, her mother, father, step-father, and paternal and maternal grandmothers all learned her care and how to respond to her needs when she's at home.

"Maria has a village," said Rivera. "With her coming home, they are my village who have learned how to change her gastronomy tube, her tracheostomy, as well as CPR training."

During training, Maria's family learned how to respond to alarms and over time, care for her, the same way they'd brush her long hair.

Once Maria leaves the hospital, her bed will be offered to one of the many children who are on the waitlist to receive this specialized level of care.

"When we opened in September of 2016 and we filled our 24 beds, we've never really had an open bed," said Imperatrice. "We've always had a waitlist."

Throughout the state of New York and across the country, The Steven and Alexandra Cohen Long Term Care Pavilion is one of very few long term care facilities dedicated exclusively to the care of medically complex children.

"There are so many children throughout the state that would benefit from this type of care," said Imperatrice. "The nurses, the CNAs, the clinicial nutritionists, intensive therapies and therapeutic recreation; they are all a big piece of these kids' lives, every single day."  

It also didn't take Maria's therapists long to realize that Maria loves music and movement.

"It's in her blood," said Rivera. Her therapists used music during her occupational therapy sessions to motivate Maria to play drums by using an adaptive switch that she'd press with her cheek so that she could play drums and make her own music. In physical therapy, her therapist would use movement to create range of motion for her joints, helping Maria reach her full potential.

"They are not just Maria's nurses and doctors, I say they're her aunts and uncles," said Rivera. "I've always seen so much love for Maria."

Though Rivera is sad to be leaving Blythedale, she's excited to bring Maria home to meet her brothers and sister and looking forward to spending holidays together, waking up as a family.

"Maria's special to us because she's been with us for so long and we know her so well," said Imperatrice. "But we're really happy that she's going home."