Hailey’s diagnosis story

Our beautiful girl, Hailey, was diagnosed on 29th May 2019. It happened so fast and was nearly missed, if we had waited just a few more hours to seek help we would have lost her!

May 28th she was her normal self, playing, smiling and giggling. She had no symptoms that pointed to type 1. She was only 7 months old. She couldn’t tell us she was thirsty, in pain or tired. She had only just started solids and was being picky which we assumed was just her. She had normal wet nappies for a baby. Hailey was born small, only 1.7kg, so had gained weight slowly from birth but had no weight loss. She had none of the 4 signs to look for - Tired, Thirst, Toilet & Weight Loss - until the night it happened.

That night of the 28th/29th May our baby girl changed. She went to bed as per normal. But within a few hours woke up screaming. Nothing settled her. She was demanding more bottle, but vomiting it up. Nothing would control her thirst. She was soaking through every nappy we put on her. She was crying in her sleep, was hard to wake up yet she was screaming. By 5am we both knew we had to get her to ED!

I drove her to Fiona Stanley Hospital, scariest drive of my life! As soon as she was in the car the screaming stopped. I couldn’t see her or know if she was ok until we got there. We were lucky there was no wait and she was taken straight in.

The first doctor we saw assumed it was gastro and the next a virus and were going to put a feeding tube down her nose to force feed her. It wasnt until the head doctor suggested a glucose check did the symptoms click! Her BSL read HIGH at 37 and ketones 7.4. Our poor baby was in DKA - Diabetic Ketoacidosis!

We were transferred very quickly to Perth Children’s hospital where the endocrinology team was waiting. Hailey spent 2 nights in ICU as we tried to get her BSL back in range. Trying to explain to a 7 month old you can’t have more milk for the thirst was distressing! She wouldn’t drink water and would get more and more distressed. Screaming the ICU down. When she was asleep her breathing was laboured, she would whimper in pain and scream out. She was started on an insulin pump and continuous glucose monitor (CGM) before we even left ICU.

In the end we spent 2 weeks in hospital learning everything we needed to know to keep our baby alive. From inserting her new devices, carb counting and more! Over the 2 weeks she started to explore solids more as her stomach ache eased and she began smiling, playing and laughing again. She was sleeping through the night and didn’t even finch when her BSL or Ketones were checked.

If we had waited any longer to get her to hospital we would have lost our baby. The doctors said she only would have lasted a day at the most. I am so glad I trusted my mummy instincts.

Hailey’s diagnosis was hard on everyone but we knew we could do it. We were a family and nothing would stop us. Hailey is strong, she has just turned 3. She is a fighter, she has shown so much courage and determination since diagnosis. She’s my little T1 warrior!