Grandmother Judith tells her story of her grown-up daughter Miriam’s experience with a continuous glucose monitor (CGM) and how it helped when Miriam herself gave birth.
The views expressed below may not reflect those of JDRF. If you have any questions about how a CGM could help you, consult with a healthcare professional.
I am in love. I don’t know who with, but if you can tell me who designed and built the continuous glucose monitor I’ll go find him or her to express my undying devotion.
My daughter Miriam was diagnosed with type 1 diabetes at the age of eight. For years she pretended it didn’t exist. The condition belonged to us, her parents. It was for us to remind about blood tests and insulin injections, to organise the right food and worry about how she would manage new situations. None of it made sense to her.
It wasn’t an easy journey – I expect all parents would say the same. Type 1 is not a simple condition, despite the assumption that injections become ‘like cleaning your teeth’.
There were the endless rounds of meals where I knew she hadn’t done a blood test or injection so I lost my appetite; the school holiday venue that refused to take her, until the class teacher said “it’s all of us or none of us” and her gap year adventure to India when I spent four months glued to my mobile phone terrified.
It took many years but she finally got on top of type 1 when her new husband, Anthony, found out about continuous glucose monitors (CGM) online.
After three months on the new machine she went from a familiar HbA1c of 10 to 6.5 and she has hovered around that number ever since. I can’t tell you the relief when she came home to tell me that first amazing result – it was champagne all round. The best news in 20 years!
Miriam always thought an insulin pump would be too intrusive, but she was willing to accept this small object attached to her tummy – just the size of a smoke alarm battery. She changes the sensor once every two weeks, then carries the monitor with her at all times. Like a small mobile phone she pops it in her bag, or her bra when dancing, and gets on with life knowing it’s on the case.
Her blood is tested every five minutes by the machine, so the only thing she has to do is set the parameters for high and low. Any time she goes outside those lines, the machine bleeps a warning.
To get her HbA1c of 6.5 she set the CGM to alert when her levels went outside of between 4 and 10. That’s very demanding. Constant vigilance was required, but she persevered because this is the requirement for getting pregnant.
One year of exceptional HbA1cs later and she was on her way to motherhood. It took no time at all – this little lad was clearly determined to join our family! She dropped the parameters to 4 and 8 and they worked as a team to stay within the lines. Her consultant was amazed and described her chart as ‘miraculous’.
We discovered that her CGM has never been officially tested for pregnancy and labour so there was no reassurance that all would be well. So we reached a compromise with Miriam’s midwives and nurses. Miriam would have a cannula put into her hand at the outset and she would agree to this being used if her blood levels went over 8 for two consecutive hourly checks.
Otherwise they would stick with the CGM, jelly babies and corrective insulin injections. Obviously, she was busy, so Anthony had control of the monitor, backed up by frequent finger prick tests to check. As the second birth partner, I was there from start to almost finish.
Anthony watched the monitor like a hawk, did regular blood tests and gave the charged insulin pen for her to inject when needed.
Only at the eleventh hour did her levels go over 8. Nil by mouth, in case surgery is needed, is a tough call for someone with type 1 diabetes, so the occasional jelly baby had to be sucked. It was the final one that took her over the line.
After a successful ‘gentle’ caesarean Emmett was safely born at 7 lbs 8 oz.
So now you see why I’m in love! This machine is such a relief to anyone who cares for someone with type 1. Imagine the ease of checking the blood levels of your child before you go to sleep; tracking them at a party, performing in the school play or playing football. You don’t have to disturb them, just stay within range and the machine will do it all.
If you have type 1 yourself, it’s a massive support knowing you will be bleeped during the day or woken up at night when action is needed.
So let me encourage you to look at this machine. Sadly it has not yet been approved by NICE (The National Institute for Health and Care Excellence), so bank of Mum and Dad was engaged, but it is the best money we have ever spent. And let’s hope that NICE see the light soon and make it available to those who would really benefit from such an amazing invention.
To read a longer version of Judith and Miriam’s story please click here.
The UK charity INPUT has a mission to help people gain access to diabetes technology. Find out more here.