BOX 1

Illustrative quotes from parents and carers

1“I am glad that he has been diagnosed after seeing 3 doctors who all fobbed me off with “it's wind, give him infacol” … but feel disappointed that there is nothing I can do for him!”#
2“I was so worried about all the noises she was making especially at night. I used to be up and down all night checking up on her as she sounded like she was choking.”#
3“I have always visited friends even when they had kids with a cold etc but feel now I may be a bit more cautious.”
4“I know what it's like to feel the glares and hear the negative comments from others who think I've brought a sick child to a public place when I know nothing about him is contagious.”+
5“My son is now 6 years old the condition has not gone away as they said it would …. We were told he would grow out of the condition by the age of two.”

#: Mumsnet thread “floppy windpipe”, 2005 (www.mumsnet.com/Talk/general_health/63818-floppy-windpipe); : Mumsnet thread “My 4 month old diagnosed with laryngeal or trachea malacia - anyone got any experience?”, 2009–2011 (www.mumsnet.com/Talk/childrens_health/714854-My-4-month-old-diagnosed-with-laryngeal-or-trachea-malacia); +: Megan Horwath, 2015 (https://themighty.com/2015/03/i-know-you-tracheomalacia).