Coping with diabetes as a teenager – Libby’s story

Libby Morter

When Libby Morter was six and on a family holiday in Orlando, Florida in late July 2008, her parents – Simon and  Caroline – became worried about her. She was drinking a lot of water and going to the toilet a great deal, especially  through the night. Libby’s mood was also poor.

Initially Simon and Caroline, who live with Libby and her older sister in Hertford, thought it was the effects of the  Florida heat, but when things didn’t change on returning home, they began to be concerned. Something was wrong  with Libby and a search on the internet, along with a niggling recollection of what these issues might mean, suggested  her symptoms matched closely those of someone who has Type 1 diabetes.

 

Their GP made a referral to the paediatric team at the QEII who asked Libby’s parents to come in to the children’s emergency service, which was a worrying time for the family.

Caroline, 41, said:

“The 8th of August 2008 is etched in our memories – this was the day that the children’s team at the QEII rang us and said Don’t panic, but we do want to see Libby and we want to see her now. We still didn’t know what was wrong with her, but that day we found out. She was diagnosed with type 1 diabetes and we left hospital that evening with a small rucksack of things for looking after her diabetes that marked a big change in all our lives – especially Libby’s.”

Type 1 diabetes is controlled by insulin, delivered either by injection or by means of an insulin pump, with patients like Libby needing to test their blood sugars at regular intervals throughout the day and night.

Libby, who is now 12, said:

“I remember that it felt weird – I didn’t really know what was going on and the thought of having to have injections every day from then on was a bit frightening. But you get used to things, even my parents testing my bloods in the middle of the night just to make sure that my sugar levels were okay. They do this because there’s a real risk of me going in to a diabetic coma when I’m asleep and no one knowing what’s happening!”

Libby’s father, Simon, 38, said:

“We all work really hard to understand as much as we can about Libby’s illness and the different equipment options available to help us manage the condition, as well as how we could help her have as normal a life as possible. The children’s diabetes team at the QEII has been a great support, providing us with advice and also listening to us when we asked them questions – often following our own research into type 1 diabetes.

“What a lot of people don’t realise is that nearly everything – from exercise to eating, going through puberty and growth, to getting a cold or bug – impacts on those with type 1 diabetes. You have to become a bit obsessive and plan ahead as much as you can – because it’s this that has allowed Libby to lead pretty much the same sort of life as any other child of her age.

Libby said:

“I’m sort of used to having type 1 diabetes now – it’s not stopped me doing anything and I lead a normal life. I get great support from my all of my friends, both home and at school. Since starting at secondary school I have discovered there are a few of us there with type 1 diabetes and we have all met together and talked about our experiences. I live with my diabetes – but I’ve got to work hard at managing it. I don’t let it manage me.”

Four years ago, Libby moved from using multiple daily injections for her insulin doses to wearing an insulin pump, which is programmed to deliver her insulin 24 hours a day, seven days a week. This had a huge and positive impact on how Libby dealt with her diabetes and gave her even more freedom.

Earlier this year, Libby had an opportunity to change her pump and the children’s diabetes team at the QEII were extremely supportive of her being given an insulin pump that they had not used before, with numerous members of the team having the necessary training on how the new pump worked. It’s pretty small and is attached to Libby’s upper arm; it delivers insulin when she needs, rather than Libby having to inject herself. The pump gets information automatically from the blood testing kit that Libby uses to measure her sugar level; the two pieces of equipment communicate with each other using Bluetooth technology.

Simon said:

“Libby has had her new pump since May 2014 and it has made a big difference. Managing type 1 diabetes is far from a perfect science but it gives us a much better chance of getting it right and helps Libby just get on with things. We still need to test her bloods during the day and during the night, but she sleeps through it all – even if we have to get her to drink some orange juice because her sugar levels are a bit low!

Caroline said:

“We’re in regular contact with the children’s diabetes nurses at the QEII – we speak at least every couple of weeks. We also have regular check-up appointments with the team every three months. It’s great to know that they are only ever a telephone call away – they have been great in helping us to understand how best to support Libby and to ensure that her diabetes is something she lives with, not suffers from.

“We were also lucky that Libby was diagnosed early and quickly. We were aware vaguely of the 4Ts – the four main signs of diabetes (toilet, thirsty, tired and thin) and that was really helpful. We got Libby to the doctors before her blood sugar levels rose so high that she became very seriously ill. Our aim now is to help Libby to manage her diabetes as well as possible as she grows in to becoming an adult in the years to come. There are ups and downs, of course, but it’s about doing the best we can for Libby.”