Children's Hyperinsulinism Charity

Courage Hope Inspiration

Macey’s CHI Story

By CHI Mum Chloe

I’d love people to hear Macey’s story as it’s one I would never wish upon anyone and one I feel the trauma we went through could have been prevented, if it was picked up on at birth.


Macey was born on the 14th November 2021. (A Long 30 hours followed by c section) but beautiful and Ob 9. We went home the following day and lived in perfect bliss for 7 months. She was an angel baby, ate, slept, and never cried!


Macey's CHI race
Maceys CHI Race


On Father’s Day, Macey became ill and following projectile vomiting for hours and hours on end we raced her to A&E. We stayed for hours and however she was sent home with antibiotics for a water infection. We got home at 3 am, I put her in the travel cot in our room as I wasn’t happy, she was ok. At 6:30 I looked over at Macey to find her dazed, vague, and deathly pale, her lips turned blue and


After 6 days in our local hospital, we were given a bed on Squirrel ward. Arriving on a Friday Macey had a Hickman line put in on the Monday and I met the Endocrine team who gave us the diagnosis of protein sensitive HI. Diazoxide was started and we noticed a great initial response.

However, they also took blood from us to test our genetics. Macey was however unresponsive to diazoxide after 4 days of being on it and we were having terrifying lows yet again. We were then given our genetic results and Macey was diagnosed with congenital hyperinsulinism. The gene being carried from her Dad Jordan, who is an asymptomatic carrier.

Macey's CHI race


After a few short weeks filled with making sure we got Macey’s new medicine, Octreotide dosage right we came home. Macey will now need a PET scan to determine whether her Hl is focal or diffuse.

We continue our journey as a family and stronger than ever she is our total hero.