Age 4, Maryland
Meet Pierce. Pierce is four years old. He loves playing with his light up train and going to the aquarium.
Pierce was born with Moebius Syndrome, a rare craniofacial/neurological disorder that manifests itself primarily in facial paralysis. Like many people with Moebius Syndrome, Pierce was born with a small chin (micrognathia) and was diagnosed with Pierre Robin sequence. Pierce was born with an internal cleft palate that was repaired surgically when he was 13 months old. Pierce has been diagnosed with Cortical Visual Impairment, a visual dysfunction resulting from injury to visual centers of the brain. Pierce is also deaf and has global hypotonia and developmental delays. He has been diagnosed as having myoclonic seizures.
Pierce has a tracheostomy (placed at 6 weeks old) and requires BiPAP (Bilevel Positive Airway Pressure) delivered through a ventilator when he sleeps. Safe monitoring of Pierce’s tracheostomy requires 24 hour alert and awake caregiving to prevent suffocation due to obstruction or as a result of seizures. Pierce receives all his nutrition through a feeding tube (placed at 3 weeks old). We monitor Pierce’s oxygen 24 hours a day with a pulse oximeter. Pierce requires nebulized medicine 2-4 times daily to assist his pulmonary functions and prevent pneumonia. When Pierce is sick he requires oxygen. Pierce has been hospitalized at least five times during his three short years for illness, (in addition to the 66 days he spent in the Neonatal Intensive Care Unit) each stay lasting an average of 1-2 weeks and most stays are in the Pediatric Intensive Care Unit (PICU). Pierce has also had a number of surgeries and he is regularly monitored by gastroenterology, pulmonary, neurology, otorhinolaryngology (ENT), audiology, and genetics as well as his regular pediatrician.
Affordable quality healthcare means everything to our family. Without it, we would face crippling medical bills that would most surely impact our ability to keep our child healthy and safe.
Pierce is on the Model Waiver funded by Maryland Medicaid. Without Medicaid, one of us (Pierce’s parents) would have had to quit our jobs because Pierce’s tracheostomy requires 24 hour awake and alert caregiving. Because no person can maintain awake and alert caregiving 24 hours per day, we would have lived in fear of catastrophe if one of us fell asleep while caring for Pierce. Because of Medicaid, both of us have been able to keep our jobs and we know Pierce is safe because we have nursing care to monitor Pierce when we are sleeping and at work.
Cuts to Medicaid would have a dramatic impact on our family. We have home nursing care for Pierce to cover only those hours that we are working and sleeping. If Medicaid no longer covers those hours, one of us may need to quit our job and we will live in fear that our child will die if we fall asleep while watching him overnight. Pierce’s medical bills crested $1 million during the first few months of his life; his medical care continues in the millions. Lifetime caps on medical insurance coverage would financially destroy our family. If the proposed healthcare bill handicaps individuals with pre-existing conditions, our son would face even more challenges and a loss of independence as an adult.
My husband and I have good jobs and good private insurance. I have a professional degree and work as a lawyer. My husband works in management at one of the country’s largest property management companies. We own our home, pay our taxes, contribute to economy as consumers, and generally work to be responsible citizens. We planned for years to achieve our professional and personal goals. What we did not plan for and could not have prevented was our son’s medical condition. We did not plan to spend months in the hospital watching our baby fight for his life. We did not plan to face the choice of giving our son a tracheostomy or leaving him in a nursing facility to prevent his death. We did not plan the millions of dollars of surgeries, nursing care, tests, ambulance rides, hospital stays and medical equipment that he needs to stay alive and healthy. Everyone needs affordable health care and the option to enroll in Medicaid or a Medicaid waiver because as parents and as human beings we simply cannot plan for good health. Sometimes, the smallest, most innocent among us are born with the most fragile bodies. America should support a healthcare system that doesn’t require bankruptcy to deal with unplanned health crises.
Submitted by Pierce’s mother