Naphtaly knows Blythedale.
His lengthy and complex medical journey led him to Blythedale over the course of 12 years as an inpatient, a Day Hospital patient, an outpatient, and most recently, an enrollee in the Hospital’s Health Home Care Management Program.
Nineteen-year-old Naphtaly, with the support of Health Home Care Manager Elizabeth Grossfeld, LCSW, is learning to take an active role in his health care.
“As a baby, I noticed that he couldn’t hold his head up,” said Naseka, Naphtaly’s mother. “It took a while for them to find out what was wrong and when they did, they said it was a progressive disease and would only get worse.”
One-year-old Naphtaly was diagnosed with centronuclear myopathy, (CNM) a rare genetic disorder that causes muscle weakness and subsequent neuromuscular scoliosis, or a curvature of the spine. His weakened lungs made breathing extremely difficult, so much so that he frequently required mechanical ventilation from a BiPAP (BiLevel Positive Airway Pressure) machine. CNM also left Naphtaly susceptible to severe respiratory illnesses.
When Naphtaly was seven, he was admitted multiple times to The Children’s Hospital at Montefiore for life-threatening pneumonia and was intubated to breathe. Months in a hospital bed left him deconditioned and unable to walk. Doctors recommended Blythedale Children’s Hospital for intensive rehabilitation and comprehensive management of his complicated medical condition.
“I was nervous at first because I didn’t want to be away from my family,” said Naphtaly. "But, the doctors, nurses, therapists and staff were all really nice and while being there I realized it was a great place for me to recover.”
After only eight weeks at Blythedale and with the support of his interdisciplinary team, family and friends, Naphtaly was weaned from intubation, then BiPAP, and was strong enough to breathe on his own and leave the Hospital to go home.
Soon after discharge from the inpatient Hospital, Naphtaly was admitted to Blythedale’s specialized outpatient Day Hospital Program for children who are able to live at home, but still require a high level of medical and/or rehabilitative care. Physical and occupational therapists continued assisting Naphtaly with navigating stairs and walking unassisted. While his body healed he resumed his education at Mt. Pleasant Blythedale School (MPBS), New York’s only onsite public school at a hospital.
“I liked being a student there because I got to meet so many different types of people going through so many different things and hear their stories,” said Naphtaly. "Even though we were different, we could still relate over some things.”
Naphtaly’s ongoing struggle with respiratory issues returned when he again contracted pneumonia requiring hospitalization. To help him breathe, he was briefly put back on a BiPAP machine, and after about a month, re-admitted to Blythedale’s Day Hospital and MPBS.
Improving health, rehabilitation advances and educational successes made it possible for Naphtaly to be discharged at the end of fourth grade and return to his community school in the Bronx.
Over the next few years Naphtaly battled more pneumonia-related hospitalizations and medical issues related to neuromuscular scoliosis which required sugery to straighten and fuse his spine. He was again admitted to Blythedale following that surgery for physical and occupational therapy to help build up his core muscles and get back on his feet before discharge.
Once home, Naphtaly was enrolled in Blythedale’s Outpatient Program where he was monitored by the Hospital’s team of physiatrists and continued learning skills of independent living, while receiving maintenance for his wheelchair (used for long-distance mobility) and leg braces from the on-site Equipment Clinic.
The staff work so hard to make sure all the kids reach their goals, and for my son, it was walking, getting stronger and taking care of himself,”
said Naseka. “Whether it was for short or long-term care, Blythedale has been extremely helpful to Naphtaly and my family.”
That “help” continued even after Napthaly transitioned out of the Hospital and back into his community with enrollment in Blythedale’s Health Home Care Management Program.
We bridge the gap between every transition a medically complex child may experience, so they don’t go without the supports and benefits they need or are entitled to,”
said Elizabeth Grossfeld, LCSW, Blythedale Health Home Care Manager. “It’s my job to be an advocate and guide, every step of the way, across a multitude of complex systems and services critical to their health, safety and quality of life.”
Naphtaly and his family benefitted from Health Home and Elizabeth’s expertise with access to community resources, help sustaining appropriate housing, implementation of an Individualized Education Plan (IEP) for special education needs, coordination of medical care and insurance coverage.
A fierce fighter for her family, Naphtaly’s mother worked alongside Elizabeth every step of the way.
“She came to every appointment at every location across the city,” said Grossfeld. “She has been one of the most amazing and committed parent advocates that I have ever worked with.”
When the world shut down because of COVID-19, their needs increased as some necessities became scarce.
“At the height of the pandemic, those with medically fragile children were unable to leave home for fear of contracting the disease,” said Grossfeld.
To help, I delivered donated food and toiletries to Naphtaly’s house, at least once a month, to keep him and his family safe.”
As Naphtaly grew over the years, so has the evolution of his care.
“I’ve watched him take a more active role in his treatment,” said Elizabeth. “My work transitioned from solely communicating with his mom to working directly with Naphtaly. It’s wonderful to see how far he’s come from when he first arrived at Blythedale as a child to now, a confident young man, taking complete ownership of his health and well-being.”
Naphtaly turned 19 in March, but spent the special day in the hospital due to ongoing health issues. Yet, he remained hopeful about his upcoming high school graduation and potential future in the real estate business.
To see how far I’ve come and how much I’ve improved over the years just makes me feel great and Blythedale played a big part of that,”
said Naphtaly. “Their programs, their people, the way they treat you and make you feel at home—it’s like a family because they just want to help you reach your goals and succeed in life.”