The seven infants in Our Lady's Hospital for Sick Children who cannot get home because of a lack of support to manage their tracheostomies are not the first to face this problem.
Some two years ago The Irish Times reported on the case of one-year-old Molly Brennan who needed 24-hour care for a serious lung condition.
She too had a tracheotomy and was at risk of cardiac arrest; however, it wasn’t until her case was publicised that her mother was offered a sufficient homecare package to allow her to get home.
The fact that a child requires a tracheotomy is an indication that they probably have serious heart or lung disease (or both). This may be related to congenital problems and prematurity. A tracheostomy is an artificially created opening in the front of the neck. When someone is acutely unwell in hospital it is connected to a ventilator to ensure appropriate amounts of oxygen reach the body.
Afterwards, tracheostomies may be kept open to allow the person bypass the nose and mouth when breathing normally or to facilitate continued ventilation.
However, they require daily care. Infection is a risk; replacement of the tube and regular suction of the airway is a must. Carers need professional support when looking after a child with a tracheostomy at home. But they also need more general support at home to allow them to devote the necessary time and attention to their sick child.
Homecare packages
Homecare packages are the solution. However, obtaining a suitable package has become a significant problem since funding for the health service has been severely pruned.
Certainly being confined to hospital unnecessarily is neither an economic nor a humane answer.
Small children react strongly to being suddenly separated from their parents. Up to 20 years or so ago, children were often alone during a hospital stay. Tears are common initially; when separation is prolonged children become passive and apathetic. However, there is now a realisation that in the past children were harmed by the experience: some felt let down by their parents, with a minority having emotional and relationship difficulties as adults.
Parents in hospital
Now parents are encouraged to stay with their child in hospital. However, for longer stays this may not be possible for geographic or work reasons. Some children may react badly by crying a lot, experience nightmares, refuse to eat or throw tantrums. Some may become withdrawn, especially from adults and some may even start sucking their thumbs or bed-wetting.
Hospitals have psychologists who can help and play co-ordinators work in children’s wards. Interestingly, play co-ordinators seem to help children get better quicker and with less pain relief.
The hospitalisation of a child is also stressful for parents, especially when it is a prolonged admission. High levels of stress in parents also impact on the child’s physical and mental response to their illness.
There is no logical reason why children who have undergone a tracheotomy should face longer than necessary hospital stays. Getting these children home safely is a recurring need and a well-oiled system should exist to make it happen.
In a properly functioning health service, a process would be in place to ensure an appropriate homecare package could be organised within days of application. It is a measure of the dysfunction of the Health Service Executive that it cannot offer such a basic service to sick children and their parents.