Type1 Superstar ✨Hailey✨

Hailey was diagnosed on 29th May 2019. May 28 she was her normal 7 month self. She had no symptoms that pointed to type 1 diabetes. She couldn’t tell us she was thirsty or in pain. She had normal wet nappies and had just started solids. Hailey was born small - 1.7kg, and had gained weight slowly from birth with no weight loss that we had noticed. She had none of the 4 signs of T1D until the night it happened.

That night of the 28/29 May our baby girl changed. She went to bed as normal. But within a few hours woke up screaming. Nothing settled her. She demanded more bottles but was vomiting. Nothing would control her thirst. She soaked through every nappy. She was crying in her sleep, had laboured breathing and was hard to wake up yet was screaming. By 5am we had to get her to ED!

I drove to our local hospital. As soon as she was in the car the screaming stopped. I couldn’t see her or know if she was ok until we stopped. Lucky there was no wait.

The first doctor assumed it was gastro and the next a virus. It wasnt until the head doctor suggested a glucose check did the symptoms click! Her BSL read HIGH at 37 and ketones 7.4. She was in diabetic ketoacidosis.

We were transferred quickly to Perth Children’s hospital. Hailey spent 2 nights in ICU trying to stabilise her sugars. 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. When she was asleep her breathing was laboured and she would whimper in pain. She was started on an insulin pump and continuous glucose monitor before we left ICU.

We spent the next 2 weeks in hospital learning everything we needed to know to keep our baby alive. From inserting her devices, carb counting and more! Over the 2 weeks she started to explore solids more as her stomach ache eased and she began being herself again.

If we had waited any longer to get her to hospital we would have lost our baby. The doctors said she would have only survived another 24 hours at most given how fast she declined.

Hailey is now 4 1/2 (5 in October) it has been 4 years since her diagnosis. To Hailey her insulin pump and CGM are just part of her, she doesn’t know any difference. She calls her insulin pump “Hops” and CGM “mammals”.

Over the last 4 years Hailey has learned to crawl, walk and play all with her Dexcom and insulin pump attached. It hasn’t always been easy. Sensors and sites have been pulled out on swings, tubing catching on door handles and alarms sounding 24/7.

Hailey still has all the normal growth spurts which she is currently having. These result in high BSL. During these periods Hailey also doesn’t stop eating! The benefit of Dexcom is being able to see her BSL 24/7 and being able to dose each and every-time she eats, up to 20 times a day!!

Hailey’s journey with diabetes hasn’t always been easy. It’s often nights without sleep, struggles trying to correctly carb count and often asking, “why?”. It has been tough on all of us, especially her brother, Brendan. Who when Hailey was diagnosed suffer depression and anxiety from not knowing if his sister would survive. But we are a family and take it on together. We are strong, brave and together unstoppable.

Hailey often gets sick due to lowered immunity from type 1 diabetes. She has had a few hospital visits due to ketones or diabetes’ complications via ambulance with lights and sirens. Hailey does not like the hospital as she has memories from bad experiences. The team at the hospital often have to sedate her just to cannulate her or draw blood. We try to manage her sick days at home for as long as possible.

Hailey also suffers from eczema from adhesives. This is managed with steroid creams before and after sensor insertions. This weakens her skin making placement of her CGM very important to allow the skin to heal in between. Often due to the steroid use Hailey has had infections related to sensors and sites requiring antibiotics. We have a reliable GP and team at the hospital, as a lot of GP after finding out about Hailey’s diabetes often put her in the “too hard” basket.

Outings with Hailey include a back pack full of diabetes supplies. Hailey cannot leave the house without her essential equipment including her phone and sugar incase of a hypo. Inside her back pack is also a spare sensor, transmitter and insulin pump site just in case of failure or emergencies. When we are out people often ask what her insulin pump is and her CGM. We are more than happy to educate people as a lot don’t realise how young it can be diagnosed. Hailey is not scared to show off her devices often making then “pretty” with stickers. Hailey’s Diabetes does not control our outings in anyway. Diabetes doesn’t prevent us from doing anything or going anywhere. As long as we are prepared we can take on anything.

Hailey partakes in out of school activities such as dance. At dance the teachers are very understanding of her diabetes. Allowing her to wear leggings and a shirt rather than a leotard as it is easier with the insulin pump and cgm. They are aware that she may need to stop to have sugar and that she has her phone close by.

Hailey is the first diabetic at her school. The teachers were excited to learn about type 1 diabetes when Hailey started. They have now trained 10 teachers to have “back-ups” if her EA is sick. The teachers completely manage her diabetes while she is at school. I do a quick handover at the start of the day and end of the day and then the teachers take it from there. I rarely get contacted during the school day allowing me to get what I need done. At school the teachers use her cgm to dose all food with finger pricks to confirm lows. They do these finger pricks where Hailey is, not removing her from her class activity or friends. Her school has educated her classmates about Hailey and what her devices are for. I have been told the children often alert the teachers if they hear her Dexcom alarm and also ask for finger pricks as it results in skittles! I couldn’t ask for a better school!

Hailey’s Diabetes is managed by her dad (Shane) and myself, her mum (Rebekah). She is to young to understand a lot of what is happening. However she assists in as many ways as she can. Holding out her finger when finger pricks are needed and alerting us if she feels unwell or strange.

Hailey’s brother, Brendan (9), has really stepped into the big brother duty when it comes to Hailey’s Diabetes. Often getting her hypo treatments when he hears the phone alarm, helping her burn off energy when she has a hyper and being there to hold her hand for removal and insertion of her insulin pump and cgm sensors. Hailey adores her brother and loves him to bits!

In the last 6 months Hailey had started to show signs of hypoglycaemia and hyperglycaemia. Hypo’s are displayed by an increased hunger, tantrums, dazed look in her eyes and feeling sweating/hot. Hyper’s are displayed as increased thirst, needing the toilet more and a sore tummy.

As Hailey gets older she will be more involved in her decision and choosing what she eats. Currently she chooses where she wants her CGM and insulin pump sites however when it comes to food, Hailey being only 4 1/2 eats what she likes. We don’t restrict Hailey’s food, she eats what she wants when she wants.

Our management of diabetes is to have a positive approach, never seeing it as a hassle or something we can’t handle. Our approach in every aspect of diabetes is learning and growth with no good or bad. If Hailey’s BSL is goes out of range together we work through it for the best outcome.