“With the insulin pump my daughter has more freedom and we are a little less nurses”

A family from Murcia explains the partial ‘liberation’ that having a system that administers insulin has meant, which means performing fewer sugar checks on their daughter

One of the great advances that the fight against diabetes is the bomb of insulinwhich Health began to finance for children starting in 2018 and later for adults with type 1 diabetes. It is a system that simulates an artificial pancreas and supplies insulin depending on glycemic controls, which for many patients and parents has meant a kind of ‘liberation’, although it is never complete.

Children with diabetes need to do more controls than adults, which meant that, before the arrival of new technology, parents and children lived, continuously, pending levels of sugar in the blood, the radioactive strips and the needles. But the insulin release system allows the controls to be relaxed. Witnessing the change is the family of Claudia, a girl from Murcia who is now eight years old and debuted when she was just 23 months old.

As for most parents, upon learning that their daughter had a serious illness and eventually mortal “the world came crashing down on them,” according to Raquel, Claudia’s mother (she prefers not to reveal her last name). From that moment on, continuous sugar controls began, even by evening, two or three times during the night. However, since Claudia has the insuline bombtwo and a half years ago, they only do blood tests during main meals, unless one of the system devices fails and they have to return to the routine model.

Meals

This has meant that Raquel and her husband, Pedro, are “a little less nurses” and that Claudia “has won in freedom because you can eat when you want and before, with other systems, you had to really respect the breaks between meals.” The pump is the size of a mobile phone and delivers insulin continuously 24 hours a day depending on the schedule programmed by the diabetes team, based on the controls of glycemia emitted by the sensor associated with it.

However, the ‘release‘ is not complete, since Claudia is a minor and does not know how to handle the pump alone, nor make decisions regarding the administration of daily insulin boluses, nor make arrangements or changes to the system in the case of that beep warning of any failure both day and night. “We can sleep a little more but we are always alert”explains Raquel. Furthermore, since they live in Murcia, where there are no nurses assigned to each schoolRaquel has to keep an eye on Claudia in school schedule and go on excursions.

The dependence

But the situation was much worse without the bomb. Rachel is teacher and the first year after the diagnosis she was on sick leave, but then she had to return to work and, at the same time, carry out continuous check-ups on Claudia. She was lucky because she was able to enroll her in the same center where she works. “But she was crazy, I had to leave class, leave my students alone, run back, all that generated a great deal of anxiety in me.” anxiety and until I had two abortions, no one explained to me that I could benefit from a work permit paid for parents of children with serious illnesses,” he recalls angrily.

Raquel is a firm defender of the figure of school nurse, which allows parents of diabetic children and other serious illnesses to combine caregiving with a job. Likewise, it demands that primary care professionals routinely do glucose controls to all children, to avoid late diagnoses or when the situation is already serious, as happened with Claudia, who had symptoms for five months but no one was able to see that her body was not producing insulin until she entered the pediatric ICU in state of diabetic cetoacidosis.