Pulmonary hypertension is relatively rare, occurring in only two children per one million. Despite its low occurrence, Blythedale treated 30 children with pulmonary hypertension last year.
Blythedale’s expertise in caring for the most medically fragile of children is evident in our Pulmonary Hypertension rehabilitation program. Children come to Blythedale directly from the Intensive Care Unit while receiving intravenous, inhaled, subcutaneous or oral medications for pulmonary hypertension. Our pharmacy, staffed by board certified pediatric clinical pharmacists, compounds therapeutic agents and prepares IV infusions on site. By investing in the most modern respiratory support technology, including critical care ventilators, portable ventilators, BiPAP, CPAP, bubble CPAP and high flow nasal cannula, we can transition infants and children quickly from the Intensive Care Unit to Blythedale.
Attending pediatricians are in the Hospital 24 hours a day, seven days a week, as a commitment to a high quality and safe environment for medically fragile children. Our multi-disciplinary team of pediatricians, intensive care physicians, pediatric pulmonologists and pediatric respiratory therapists work closely with nurses, and physical, occupational and speech therapists to monitor cardiac and respiratory status while helping each child reach his or her full potential. Children and families maintain their relationship with the child’s referring medical team. We have regular communication with the Pulmonary Hypertension teams from our referring institutions and arrange follow-up visits for evaluations such as echocardiograms and cardiac catheterizations, as needed.
Parents are involved in the care of the child and learn proper use of equipment, how to safely give pulmonary hypertension treatments and manage respiratory support devices from the start of admission. Caregiver training is one of the hallmarks of the Blythedale experience and critical to prepare families to bring a child with pulmonary hypertension home.
A Journey of Hope
Follow the extraordinary journeys of a few of Blythedale's smallest and most fragile infants, as their families prepare to bring them home... for the very first time.
Pulmonary Hypertension Team
Our multi-disciplinary team of pediatricians, intensive care physicians, pediatric pulmonologists and pediatric respiratory therapists work closely with nurses, and physical, occupational and speech therapists to monitor cardiac and respiratory status while helping each child reach their full potential.
Joyful Jackson Goes Home
Jackson, a preemie twin, was born weighing as much as a carton of eggs and diagnosed with complex respiratory and feeding issues. But, just like his brother and parents, Jackson is a fighter. While at Blythedale Children's Hospital, he packed on 20 lbs., became stronger, more mobile and is now on the path toward eliminating use of his respiratory support devices.
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.
Arriyana Doesn't Let Pulmonary Hypertension Keep Her Down
16-month-old Ariyana was born at a mere 25-weeks gestation, weighing only 15 ounces. Her immediate medical needs were highly complex, given her extreme prematurity. She had several serious complications, including bronchopulmonary dysplasia and retinopathy of prematurity.
It’s a comfort level for the families to know that when they come from these highly intense environments, the doctors here at Blythedale know exactly know what to do.