Sophie’s Law: A National Plan for Diagnosing, Treating, and Managing Childhood Sleep Apnea

Sleep apnea in children is a serious medical condition. When left undiagnosed or untreated, it can cause long-term damage to a child’s brain, heart, development, and quality of life.

Yet across the UK, families like mine are being failed.

My daughter, Sophie, has complex medical needs and was diagnosed with severe sleep apnea. During a hospital sleep study, her oxygen levels dropped to as low as 72% — a level considered life-threatening. She repeatedly stopped breathing for up to 45 seconds at a time, and these episodes occurred throughout the night. Despite this, no oxygen support was provided, no urgent care plan was put in place, and we received no clear communication about the severity of her condition for over six months.

During that time, Sophie was rapidly deteriorating. She wasn’t talking, didn’t play, and was constantly exhausted. She couldn’t walk more than a few steps without becoming breathless. I made frequent A&E visits, sent multiple emails and made phone calls to her paediatrician, begging for help — yet no management plan was ever created. Her behaviour, development, and health all suffered. She was left to struggle, despite every warning sign.

Sophie eventually underwent surgery to remove her tonsils and adenoids, and she is now being investigated for central sleep apnea. But this came far too late — and the impact of being left untreated for so long may never fully be undone.

And this is not just our story. Since speaking out, I’ve been contacted by other mums whose children are also being dismissed and left untreated in very similar circumstances. This is a wider system failure — and it cannot continue.

We need urgent reform. That’s why I’m calling for Sophie’s Law — a national framework for how childhood sleep apnea is diagnosed, treated, and managed across the NHS. This law would:

Mandate clear clinical pathways and timeframes for assessing sleep-disordered breathing in children

Require automatic intervention and oxygen support when oxygen levels drop below safe thresholds

Ensure parents are informed of critical results within 7–10 days

Provide immediate access to multidisciplinary care for complex or high-risk cases

Establish national guidelines to prevent postcode inequality and system-wide neglect

Sophie was failed. But it’s not too late to make sure no other child is.

Please sign this petition to support Sophie’s Law and demand accountability, compassion, and urgency in how we treat childhood sleep apnea in the UK.