It wasn't so long ago that doctors assumed that it would be better for the family if babies like this died quickly - and quietly helped them off. I had a cousin with spina bifida, who only lived because her own mother was a doctor and prevented this outcome. My cousin got to live to adulthood and enjoy life, but still died early because of an infection; likely a consequence of the physical impairments of this condition. It's amazing to see hope for a complete cure.