MANY parents of new-born babies go through times when they fear something dreadful will happen in the night and they won’t be able to wake their child in the morning.
For Gemma Robinson that fear doesn’t ever go away, even though her daughter Faith is now aged three.
Faith has Type 1 Diabetes and if her blood sugar levels drop from the normal range in the night when she is asleep it is possible that she may not wake.
That is the fear that Gemma and husband Paul have lived with since Faith was diagnosed in October last year, leading to what Gemma calls, “an emotional roller-coaster every day”.
Gemma and Paul also have an 11-month-old, Casey, but Gemma feels she has two new babies in their home at Elizabeth Crescent, West Pinchbeck.
Thankfully, Gemma and all other parents of children with diabetes in the Spalding, Holbeach and Boston areas have the support and help of a fantastic team at the Pilgrim Hospital, headed by senior consultant paediatrician specialising in diabetes Dr Ahmed. The team includes a dietician, a clinical psychologist and two specialist nurses in children’s diabetes, Emma Boole and Katie Butler.
Katie, who lives in Donington, has become a family friend because she sees Gemma and Faith so frequently, although the team has a total of 80 children with diabetes on their books who they see from diagnosis to them leaving secondary school.
Worryingly, the number of children with diabetes is increasing. Katie says 20 years ago it was rare to have a child with Type 2 but now there are quite a few on their case load.
Type 1 diabetes is also on the increase in children under five, and there are various theories about why that might be. Katie says: “One theory is we don’t challenge our immune systems like we used to do because children are cossetted much more because parents want to protect them.”
Katie points out an important difference between the two types of diabetes: Type 2 is caused by lifestyle, such as diet and lack of exercise, and is not immediately life-threatening. For Type 1, there is no known cause and it is a life-threatening condition.
Katie says: “We just know it is an auto-immune disease, so your own body destroys cells that produce insulin, and without children being injected with insulin four or five times a day they become seriously ill.”
Type 1 can develop over a few months but Katie says most GPs in our area are good at spotting the symptoms and giving a diagnosis, so that children can be rushed to hospital and injected with insulin.
Often, children are diagnosed, either by testing urine or a finger prick, just after a non-connected illness – for instance, Faith, who has asthma, had an infection and because her body was in stress her sugars would have been rising and her failing pancreas (insulin is produced in the pancreas) would not have been able to release enough insulin to deal with the sugars.
It is important to control blood sugars using injections to mimic nature’s release of insulin. Faith has a long-lasting injection, because we naturally have a little insulin in our bodies at all times, and then every time she eats Gemma has to balance the amount of insulin she gives Faith against the amount of sugar-releasing carbohydrates in her food.
It’s a strict regimen of checking blood sugar levels before meals and at bed time, and giving the right amount of insulin to bring Faith’s levels within the normal range. The consequences of failure to follow the regimen are possible complications in the long term, such as problems with vision, kidney failure, circulation problems and neuropathy, which is damage to nerve endings which typically lead to problems with feet.
In the short term, if blood sugars are out of kilter a child will be unable to concentrate on other matters, such as lessons.
“I know it sounds extreme, but every morning you wake up praying her blood sugar levels have not dropped low in the night,” says Gemma who was forced to give up her job as a nursery nurse at Westfield Farm Day Nursery in West Pinchbeck.
“Every night is different because everything affects diabetes – the weather, Faith’s activity levels, and a simple cold can change blood sugars. A sickness bug can put a diabetic in hospital. Even her moods, so if she’s feeling anxious or nervous that affects her.
“It’s so stressful and other people don’t understand that Faith could be blind if I don’t get it right.”
Katie agrees it is far worse for the parents of small children, but adds that local schools have been “fantastic” at supporting pupils with Type 1 Diabetes. Katie or Emma will go into schools and teach the teachers how to recognise a hypo (low blood sugar levels) and a hyper (when blood sugars are high). Older children learn to manage blood sugars themselves, and advances have made the disease more controllable.
Katie says: “Pilgrim Hospital gets bashed but we have so much to be grateful for and if you get diabetes in this area you are pretty well looked after.
“We are a good centre and our children, statistically, are generally better controlled than in other areas.”
n Gemma is organising a ball at the Castle Sports Complex in Spalding for Saturday, October 27 to raise awareness and money for diabetes charity JDRF. Tickets are £40.
Contact her or fellow organiser Kirsty on 07743 409314/01775 640722.