Difficulties of managing diabetes in a baby/young child
The mothers described having little respite from the constant care that a small child with diabetes required. Levels of anxiety were particularly evident shortly after diagnosis and were related to the fact that many of the babies had been critically ill:
Two of the patients who were successfully transferred from insulin to sulphonylureas
The first month I had her home neither of us could sleep, we had the cot jammed up against the side of the bed, we just lay there watching her, seeing that she was OK.
Dramatic fluctuations in blood glucose levels also contributed to the need for continuous supervision:
It was absolutely exhausting because he would go from one extreme to the other, one minute his blood glucose would be 20 and then it would be 2.
This highlighted the need to be persistently alert for problems developing in children who were too young to recognise signs of hypoglycaemia themselves. Consequently mothers acknowledged feeling overprotective towards their child with diabetes and frequently chose not to leave them with others:
I wouldn't leave her with anybody, I was with her 24/7.
Many of the mothers found it distressing to leave their child for short periods of time even with family members:
I remember when I'd left her with Mum, I'd gone off to do a food shop, if there was a queue at the checkout I used to get a panic attack, thinking ‘I’ ve got to be back soon', things like that were traumatic.
When families did feel able to leave their child for short periods finding someone to look after them was difficult due to others' concerns about the condition:
Nobody would come and baby-sit for us then, everybody was frightened.
The diagnosis of neonatal diabetes consequently impacted on relationships between parents:
I didn't want anyone else to look after him, not even my husband in case things weren't right.
Mothers also felt unable to direct adequate attention to other siblings as a result of the time needed to look after their baby with diabetes:
I felt as if I was neglecting my other son.
Having a baby with diabetes created a significant additional burden of responsibility, which was usually taken on by the mothers as part of their nurturing role. The impact on everyday life was significant in terms of the time and attention required to look after the child with diabetes. This often led to exhaustion, over-protectiveness and feelings of guilt contributing additional stresses to family life.
Recognition and implications of learning difficulties and muscle weakness
Six of these individuals with KCNJ11 mutations had a degree of learning difficulty or muscle weakness. In some cases it was the families who identified the problem and alerted healthcare professionals:
He wasn't developing as my other child had … by a year old I was very concerned. They kept saying ‘He's been very sick, he'll catch up’. At 18 months I said ‘No, this isn't right, there's something wrong with him’ and he was assessed.
In other cases the effects of muscle weakness had been noticed by the families:
Her co-ordination wasn't great, tricycles she'd find difficult … She wasn't really walking properly until she was 18 months. She was a bit clumsy going up and down steps and she ran awkwardly.
Despite clear signs of developmental delay and muscle weakness, one family, whose son developed diabetes over 50 years ago, had not confronted the issues until they attempted to register him at school and described their feelings of devastation:
He was still wearing nappies [at 5 years], he couldn't walk … we saw the headmistress, she said ‘He’ ll never be able to do anything, he's mentally handicapped' … The signs were there but we just didn't see that, it wasn't talked about, I know it broke both our hearts.
Difficulties with numeracy were frequently described in these individuals:
She couldn't count at all, she can read and write, she just cannot understand anything to do with figures.
These problems were often combined with poor attention spans:
He's doing OK but maths is just a complete nightmare, they said at school that he doesn't concentrate at all.
Such difficulties also had an impact on general life skills, for example, managing finances:
If I gave her £10 and said ‘Can you get something for £8.99’she wouldn't have realised what change she should have brought me.
These difficulties also had implications for gaining and maintaining employment:
The manager of a local supermarket took her on, but because she couldn't operate a till, they paid her off.
The majority of the families had identified learning difficulties themselves and had requested assessment, occupational therapy and learning support. Particular problems related to difficulties with numeracy, which could impact on future employment opportunities and independence.
Impact of transfer from insulin to sulphonylureas
Many of the families were thrilled at the possibility of sulphonylureas as an alternative to insulin injections:
I was excited, especially for the youngsters.
I's father talking about his grandchildren B and C
In some cases parents didn't want to raise their hopes about the treatment change:
I was determined I wasn't going to get my hopes up, I was trying not to get too excited about what the repercussions could be.
Others were unsure whether tablet treatment would be successful:
This is going to be great if it works.
The parents who had diabetes themselves were more concerned that the sulphonylureas should work for their child:
I'd rather it worked on A, I don't know any different.
Despite the excitement of transferring to sulphonylureas, families needed substantial support. This reflected the importance that insulin held for the families:
She couldn't get her head around it … she knew she had to have her injections, she knew nothing else, she knew her insulin injections were keeping her alive in effect and so she was very traumatised by it.
Consequently some individuals discussed with friends whether the treatment change was something to consider:
It's a big thing to think about … but I talked to my friend about it and she said ‘You might as well go for it because it's the only way you’ ll find out'.
J talking about her own diabetes
Transfer to sulphonylureas removed the daily difficulties of taking insulin and eliminated the stigma often associated with injecting in public:
Obviously people look at you when you start injecting a baby and a toddler, ‘What the hell are you doing to those kids?’ People would look at me as if I was giving them drugs.
Stopping insulin enabled families to normalise the condition, minimising the need for disclosure of diabetes in public. In those cases where the child was still young a liquid suspension of sulphonylureas was used:
We couldn't go out because you'd have to find a ladies loo, a babies room to do his injection … but now you can go into a restaurant and people think you're just giving him cough medicine or something.
H's mother talking about her grandchild A
Despite initial concerns amongst families improvements in glycaemic control were frequently reported following transfer from insulin to sulphonylureas:
His control is excellent, a lot better, he's 5.8, 4.2, 7.8, nothing's been over 8.
When I had two injections a day my HbA1c was 8, but since I've been on the tablets my last blood test [HbA1c] was 5.4.
I talking about his diabetes
Problems with dramatic swings in blood glucose levels and frequent hypoglycaemia were also significantly reduced:
It's made a huge difference, I'm not constantly wondering if he was having a hypo … he's not going from one extreme to the other the whole time.
Improvements in concentration and understanding were also observed following treatment change:
The teacher said to me ‘We have seen a big difference’, because they were doing a maths test last week and he got full marks for that.
Consequently transfer to sulphonylureas led to vastly improved quality of life for the patients and their families:
Family life has completely changed. Before we were unable to live the life of a normal family as he had 2–3 hypos a day, now he is more independent, he is generally well and has not had one hypo. I have even had the courage to let him go to a friend's for tea.
Increased stability of blood glucose levels and freedom from injections enabled families to allow their children greater independence. It also reduced the social stigma the families had previously experienced.