Have a Heart

My son was born with Hypoplastic Left Heart Syndrome, it affects 1 in 10,000 live births every year. My son has literally half a heart. He has had 3 open heart surgeries. One at 7 days old, the 2nd at 6mo, and the last at 3 yrs. This is the current plan for kids like him, aside from palliative care. He will need a transplant as a teen we are told. With Obama care, we didn't have to worry about his heart condition or capping out- under Trumpcare, our son who has been living in heart failure for 6 years now will what- just die? Be turned away When the time comes? Congenital heart defects kill more young children than every childhood cancer combined. What do we tell him, after he has already fought so hard to be here? And his father is a Veteran of the War during Operation Iraqi Freedom? And what of the Medicaid that covers children like him who did not ask to be born with illness or cancers but their hardworking families need help to save their children everyday with medication, equipment, etc.