How often do we take everyday things for granted and do not give them a moment’s thought? Nearly all of us will take a breath every 5 seconds, every minute, every hour, every day. I want to tell you about children who cannot breathe naturally and how together we can help them.
The main reason why some Belarusian children with chronic conditions have to spend long periods, even years, in hospital intensive care units is because they rely on large artificial ventilators to breathe.
If the Belarusian Children’s Hospice (BCH) could provide them with much smaller portable machines which they could use at home these children could enjoy living with their parents, brothers and sisters.
We know of a large and growing number of children suffering from various forms of muscular dystrophy. As the disease progresses, the muscles weaken and the child’s body becomes less able to function without assistance. These children want to live as normally as possible and can still have a good quality of life. Some of them write poetry and play music, others read avidly and they all want to rise to every challenge that life offers. As many as 20 years ago, research in the US showed that children using a home ventilator were able to continue their schooling and socialise normally and their quality of life was assessed as being no less than that of the doctors themselves. A child on a ventilator at home can look forward to living for 18 to 30 years.
Until recently, BCH could only help children on artificial ventilators after they had been hospitalised in intensive care units and given a tracheostomy to insert a small pipe into a hole made in their windpipe to which a ventilator could be attached. Two of the earliest portable ventilators that BCH received were a joint donation from Friends of the Belarusian Children’s Hospice (UK) and Chernobyl Children Life Line – Inverness Link in 2011. At the same time, BCH launched campaigns in Belarus to help families to buy their own portable ventilators which had become available within the country. These were, however, much more expensive than the Nippy ventilators brought from the UK by Friends of BCH. The lives of the children receiving these ventilators were revolutionised. They came out of the antiseptic surroundings of the intensive care unit and went home again.
When a child has a tracheostomy, they experience difficulties when speaking and swallowing and it is a constant struggle to keep the hole in the throat clear of infection. To avoid the need for hospitalisation and a tracheostomy, the Belarusian Children’s Hospice has started to provide early home ventilation via a nose or mouth pipe. Initial results indicate a tremendous improvement in the child’s quality of life. The boy or girl can continue to live at home, there is no need for an operation on the throat and, if their condition allows it, they can even carry on going to school.
BCH now has specialists to train parents in the use of the portable ventilators, we have trained medical staff to oversee the treatment of ventilated children at home and we have solved the problem of where to get the small ventilator parts which need replacing regularly. All we need now is to raise more money so that each of the 30 children currently in intensive care units solely because they need a ventilator and the 20 children we know who will sooner or later need a ventilator can have a portable machine. Hopefully, the latter group of children will not have to go through the trauma of long visits to the intensive care unit and surgery. We hope to buy Nippy ventilators which are internationally acknowledged as being one of the best on the market and very good value at £5,000 each.
The Belarusian Children’s Hospice is streets ahead of anyone else in Belarus in its ventilation at home programme. This is yet another example of what a huge innovator BCH is in Belarus and what a significant partner it has become to the Belarusian equivalent of the National Health Service. BCH has initiated major health reforms in Belarus including putting in place co-ordinators for children’s palliative care services in every region in the country and creating a children’s palliative resource centre – all with the blessing of the government.
On 24th October the Belarusian Children’s Hospice will be 18 years old. I would like to celebrate its birthday by being able to buy more artificial ventilators. At BCH we want to spare children from the trauma of surgery and intensive care wards and enable them to enjoy the kind of family life we must not take for granted. Please help us to realise this dream by donating to Friends of BCH today. It could be the best birthday present you have ever given.