Congenital Hyperinsulinism

Dawn Butler Excerpts

Tuesday 8th April 2025 Westminster Hall

[Dawn Butler (in the Chair)]

I will call Sarah Hall to move the motion and then call the Minister to respond. I remind other Members that they may make a speech only with prior permission from the Member in charge of the debate and the Minister. As is the convention for 30-minute debates, there will not be an opportunity for the Member in charge to wind up.

[Sarah Hall (Warrington South) (Lab/Co-op)]

I beg to move,

That this House has considered the impact of congenital hyperinsulinism on patients and their families.

It is a pleasure to serve under your chairship, Ms Butler. I dedicate my remarks to my constituents Joanne and Gavin and their daughter Ibbie, who is two years old. Ibbie lives with a rare and serious condition called congenital hyperinsulinism. This is a term many will not have come across, but one that has come to define every part of life for the families that it touches. CHI affects around 95 babies born in the UK each year, with just over 2,000 people currently living with the condition. It causes the body to produce too much insulin, leading to dangerously low blood sugar levels. Left undiagnosed or unmanaged, the consequences can be life altering, increasing the risk of long-term neurological complications and impaired neurodevelopment.

The clinical challenges are complex and the emotional toll on families enormous. When I recently met Ibbie at one of my constituency surgeries, I met a bright, smiling two-year-old, full of life, but behind that smile is the reality her parents face every single day of managing risk, navigating a system that too often does not understand their daughter’s condition, and fighting for basic support. While the challenges Ibbie faces in living her life are many, her parents Gavin and Joanne are doing everything they can to help navigate them.

Joanne and Gavin are both teachers—a maths teacher and an English teacher—but they cannot work. Ibbie’s needs mean they must always be close by. They must always have access to a car, and theirs cannot be a one-car household. Every family decision, no matter how small, is shaped by proximity to emergency care. Their other children have also been drawn into the experience. They have learned how to spot signs of danger and been taught how to perform heel pricks. The whole family has stepped up to help keep their baby sister safe and well. It is clear that congenital hyperinsulinism is not just a medical diagnosis; it is a whole-life diagnosis.