My surviving boys, Oliver and Victor, weighed 1 lb 11 oz and 1 lb 13 oz respectively. Because being born at 26 weeks (14 weeks early) just wasn’t enough of a hardship, Oliver also has a serious heart defect totally unrelated to his premature delivery. He had his first heart surgery when he weighed 3 lbs. 5 oz.
My children suffer from chronic lung disease and were both on oxygen for a year. The combination of a bum heart and crappy lungs has been a terrible burden for Oliver. He has been admitted to the hospital with pneumonia more times than I care to count, a common cold has him off of school for a week, and he is always the last in phys ed. He is the happiest, sweetest boy you will ever meet, so most days it doesn’t get him down.
Both of my children bled into their brains at birth, a type of stroke unique to premature babies. Premature brains are meant to be cushioned by amniotic fluid, not exposed to gravity and the other harsh environmental realities of life outside of the uterus. For Victor, that meant cerebral palsy. Tight, twisted muscles and balance that made him wobble like he was constantly three sheets to the wind. For Oliver, that meant muscles that are weak and collapse. At the age of eight, holding a pencil correctly requires a look of such intense concentration that it breaks my heart. Every time.
My kids, through the wonders of modern medicine, intense work at home, and amazing public school teachers have defied the odds. They look healthy and happy and act crazy like eight-year-old boys should. However, on paper they’re still a combination of these words: dystonic cerebral palsy, hypotonia, congenital hypothyroidism, right ventricular hypertrophy, cerebellar dysfunction, bronchopulmonary dysplasia, asthma, moderately severe pulmonary valve regurgitation, severe gastroesophageal reflux, less than 5th percentile in height and weight.
If the Affordable Care Act (ACA) is struck down by the Supreme Court, any one of those diagnosis will make them uninsurable and I will need to face reality and guide them to careers where they will be part of a large group health plan. They can never work for a small business (they’d drive up the premiums) or, God forbid, for themselves (they could never purchase an individual plan). That American mantra of, “You can be anything you want to be when you grow up” just won’t apply to them. I’m not sure what I’ll do if they show any proclivity for the arts. I want them to have health care.
A caste system involves social restriction and social stratification with membership determined by birth and remaining fixed for life. By that definition, if the ACA is struck down, we will once again have a medical caste system for premature babies and every child born with any medical condition.
Except the American medical caste system is anthropologically unique. If re-established by the Supreme Court, at anytime anyone can find themselves a member.