Ventilator-Assisted Living©

Winter 2004, Vol. 18, No. 4


Home Care for Children in Holland

Trudi Taat-Krakeel, Home Ventilator Nurse, Sophia Children's Hospital, Rotterdam, The Netherlands

It is better for children who need more care to live in their own home with their whole family. In Holland, most of the children who use 24-hour ventilation live at home with their parents. The responsibility of caring for these children is constant, but they can apply for a Person Committed Budget (PCB). A special committee looks at the total amount of care the parents must provide the child, and it determines a budget that the parents can use to hire people to help look after their child. (The parents' income is not a factor.) The people can be nurses or friends or a member of the family.

There are also houses that have been adapted for ventilator-assisted children, who can stay for a few days while their parents have some time for themselves. The children can stay one or two weekends per month and even for a holiday vacation. The people who work in these houses are not nurses, but specially trained people taught by the nurses of the Center for Home Ventilation. An additional option is a house where children live during the week and go home on the weekend.

The Story of Anouk
As told by her mother, Danielle Vink

Our daughter, Anouk, was born six years ago with Pompe's disease, a serious muscle/metabolic illness. It was estimated that she would not live beyond a year.

Because it was our last recourse, we enrolled Anouk in a trial of enzyme replacement therapy when she was seven months old. She started receiving weekly enzyme replacement therapy by an infusion at the Sophia Children's hospital. At that time, Anouk needed 24-hour assisted ventilation via tracheostomy.

Anouk spent the first two years of her life in hospital because our house was not adapted for her. When it became clear that Anouk was not getting worse, we decided to take Anouk home with us. The home ventilation team looked for a suitable home ventilator, which was difficult because Anouk weighed only 10 kilograms. Finally, we went home with the BiPAP® Synchrony (Respironics, Inc.).

From the moment Anouk came home, we used PCB to engage nursing assistance to help us with her care so that now and again we can go out to "recharge our batteries."

When Anouk was 4 years old, her condition became stable, and we started looking for a suitable school. We found a special school in our neighborhood, but no one there knew how to use the ventilator sufficiently. So we created a team of people who could provide that kind of care. The team (three nurses) stays the whole time with Anouk – monitoring her equipment, suctioning her and helping with her schoolwork. I trained them myself, so that everyone provides care for Anouk in the same way.

Anouk has been attending school for two years. She spends four days a week at school. The taxi comes for her at 8:15 am and brings her home at 3:15 pm. I don' t go with Anouk to school – she must learn to function without me and I can learn to release her. Of course, I always will be there in the background.

I provide Anouk's care when she is at home; it is a daily routine that I like to do in our family. For my other daughter, it is pleasant that we are a family and that there are not always other people in our home. Sometimes we have a short holiday together while someone else, paid by money from the PCB, looks after Anouk.

In the past few years, we have found a good balance, with everyone positive about this way of caregiving in the family. I recently started to work in the evening hours, and Anouk's father is looking after her very well.

The opportunity to apply for the PCB makes it possible to have Anouk with us at home, and we are together, one happy family.

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