And in talking about complex needs, there's an excellent piece by a parent in the British Medical Journal called Never say never about our child.
It tells the story of a family raising a child with Trisomy 18, and how, when they first received the diagnosis, there was a change in how doctors viewed their daughter. For example, every time she was admitted for a surgery, they were asked whether they wanted her resuscitated. "Being asked the resuscitation question so often made us feel that doctors were questioning Isabel's right to live," the author writes. She includes five pieces of advice at the bottom of her piece on how health professionals can better support families like hers.