Sixteen-month-old Jackson is full of joy and it shows. He loves to laugh, smile and play with his twin brother, Connor.
As rare dichorionic/diamniotic identical twins, the pregnancy was complicated and the twins were born extremely premature at just 25-weeks gestation.
“My wife was hospitalized for about a month before they came,” said Cory Fehr, the twins’ father. “So, we just lived with the unknown, the worry and fought every single day.”
Connor weighed just under two pounds while his brother, Jackson, weighed a little more than a pound - or as much as a carton of eggs. It was a proud moment for both parents, but one also filled with uncertainty about what the future would bring for their tiny miracles.
Connor was eventually able to go home with a feeding tube, but his brother’s medical journey was more complicated.
Jackson was intubated at birth to help him breathe and became ventilator dependent. He remained hospitalized with various medical complexities including chronic lung disease, or bronchopulmonary dysplasia (BPD), pulmonary hypertension, feeding issues and hydrocephalus with neurodevelopmental concerns.
“We came close to losing him several times, but he always fought through everything and anything,” said Cory. “His will to survive is extremely strong.”
Jackson was transferred to Children’s Hospital of Philadelphia where his parents credit their medical team with saving his life. He remained there until medically stable enough to be transferred to a hospital closer to home. Last August, nearly one year after he was born, Jackson arrived at Blythedale Children’s Hospital in Valhalla, N.Y.
“When he was admitted, Jackson required a very special type of ventilator that’s sensitive to his specific needs,” said Dr. Dennis Davidson, Unit Chief of Blythedale’s Infant and Toddler Unit. “Once he was able to tolerate a standard ventilator, he became much more mobile which led to more speech, feeding, respiratory, occupational and physical therapies. He could also go to our infant school and be exposed to our developmental team and see all the wondrous things that happen there like peer-to-peer socialization and intensive rehabilitation.”
With the oversight of Blythedale’s interdisciplinary clinical care team, the toddler is learning how to roll over, sit up, hold his head up, grasp and follow objects - all on his own. Jackson is getting stronger and his lungs are improving tremendously. As a result, he is undergoing ventilator-weaning protocols to reduce and eventually eliminate use of his respiratory support devices. In addition, successful nutrition and feeding strategies have helped the former preemie pack on more than 20 pounds.
“The goal is to eventually get Jackson home,” said Dr. Davidson. “It’s done with our continuity of care at Blythedale, from start to finish; the same team will see your child throughout their entire hospital stay.”
Jackson’s parents wholeheartedly agree and have been gearing up for that special day by participating in extensive parent and caregiver training at Blythedale. The customized educational program teaches parents how to care for their medically complex child when they go home, and become competent and confident caregivers.
“Everybody’s here for the same purpose, the same mission - to get children home,” said Cory. “Jackson didn’t start living until he got to Blythedale and I know he wouldn’t be doing this well if it wasn’t for the people directly involved with his care.”