The struggle is way
''With the stimulation system BB OK from KinderThuisZorg came the turning point. Bente now pricks herself.''
Bente Ramaker is 7 years old and has CHP. Every night before bed she has to be pinned: a growth hormone. This resulted in six years of struggle, says Bente's mother. With the BB OK stimulation system of KinderThuisZorg, the turning point came. Bente now pricks herself.
Immediately after her birth, it was clear that something was wrong. Bente was sluggish and unresponsive. After four weeks the diagnosis came: CHP. She had a reduced thyroid hormone, T4 was too low, hardly any growth hormone and no cortisol. The parents' worries were great. Their child would need medication all her life: pills and a shot. A normal life was out of the question. In the hospital, they learned how to inject the growth hormone, called MAX by the manufacturer: a pin in the thigh. Every night before bed. One problem: Bente didn't cooperate.
'It started at dinner. The negative atmosphere. Nobody said it out loud, but all three of us thought the same thing: soon MAX will have to do it again. We have to poke Bente as close to sleeping as possible, because normally you make growth hormone at night too. Other parents then read a story to us, my husband and I were busy trying to calm Bente down for the shot. In the end it only worked if we held her in a hold. Every night she started crying, say screaming. Traumatic, of course, for such a child.
'We were given all kinds of tips and tricks in the hospital to distract Bente. These worked for a while, but not for long. When she turned four, we went to a child psychologist. Play therapy helped for a while. Then it went wrong again. The child psychologist suggested bringing in KinderThuisZorg, but I didn't want that. I thought why does it take a stranger to prod my child? It also seemed like a breach of our privacy, a nurse at your door every night. And what if you wanted to go on vacation? All prejudice it turned out in retrospect. In January of this year, we went to the child psychologist again, Bente was now 7. Again she suggested to use KinderThuisZorg. Also because otherwise there might come a time when Bente would no longer trust us. We were already at that point.
'We should have done it much earlier. They are all such nice pediatric nurses that we had over. They even visited us at the campsite to prick. That was still quite a drama, because by now Bente was ready to prick herself. And pricking herself earned three stickers. KinderThuisZorg works with BB OK, a stimulation system. Bente responded very well to it. Together with the pediatric nurse, your child determines which goals are achievable. I can still see Bente sitting at the kitchen table, heavily negotiating. She inherited that from her grandfather, who is also such a trader. But the good thing is: she now has the feeling that she is in control of her own life. Pricking within five minutes, for example, yields one sticker. Sticking herself with the nurse next to her earns two stickers and sticking all by herself earns three stickers. She agreed on this herself with the pediatric nurse. The sticker sheet has already gone to school with her. She is super proud of it.
'During the intake interview with KinderThuisZorg they already predicted that Bente would be able to prick herself within three months. I thought: well, then you don't know Bente. But they were right. After six years, we finally no longer have a fight. Even in the evening at the table, it is cozy again. We don't think about MAX anymore, we think about Bibi and Bink, the sticker heroes.
Text: Nicolline van der Spek