I spent a day with Valentina Maslova, an experienced nurse with 32 years’ hospital experience before coming to BCH almost five years ago. Valentina told me, ‘I decided to give working at the Belarusian Children’s Hospice (BCH) a try and now simply cannot imagine myself leaving’.
Each morning begins in the same way for all the nurses at BCH in Baravlyany, a district in Minsk: the team meeting to discuss their patients, those they visited yesterday and those on the list for today. The meeting brings together not just the nurses but also the doctors and the director of BCH, Anna Garchakova, who knows each patient by name. Through the door you can hear, ‘Has Masha’s cold improved?’ and ‘Take a book for Pasha, he likes them better than playing with cars’. The nurses always take a small gift with them. Some of the children they visit are active and physically able, they love reading and playing. One of the nurses’ aims is to make the children feel as normal as possible.
The morning’s meeting over, Valentina has three home visits to make in different parts of Minsk. The parents say when it is most convenient and BCH does its best to fall in with what suits the child and the family. The first family on today’s list are expecting Valentina at 2pm, the second who live near by at 3 pm and the last family, who are close to the hospice in Baravlyany,at 5pm. Valentina has to just about pass the door of the last family on the list to visit on her way to the others and then come all the way back in the evening. This is not the most logical geographical plan for her visits, particularly as she travels on public transport, but it is important that the families’ wishes are accommodated if at all possible. BCH’s own car is generally used for visits to families who live a long way outside Minsk so the nurses visiting families within this large city make their own transport arrangements.
Valentina is responsible for 25 families with children ranging in age from just a few months old to young adults up to 24 years old who have been looked after by the hospice since they were children. Some of her patients are partially or totally immobile, many suffer from convulsions and others are unable to put on weight due to their complicated health problems. Valentina provides not only professional assistance but she becomes a family friend. ‘Sometimes a mother just wants to talk to someone, to find a listening ear or to ask for some advice,’ says Valentina, ‘and this can be just as important. We sit down over a cuppa and have a chat. I can spend several hours there.'
It is time for Valentina to change buses and at the stop waiting for her is another BCH nurse, Ludmila Ivanovna, who is clutching gifts. Today one of their little patients has her fifth birthday. In the trolleybus, Ludmila shows Valentina the presents, a teddy bear and a book, then she puts them carefully back into the plastic bag. During the rest of the journey the nurses discuss their young patients and families. It is obvious that close relationships have been forged.
‘It’s only taken us 1 hour and 20 minutes today, that’s quick,’ smiles Valentina, ‘we were lucky to get on to the fast bus.’ The nurses are used to travelling the length and breadth of the city.
‘Pasha, look! Auntie Valya’s here!’ calls Pasha’s mother, opening the door. Pasha is 2 years old and is a long awaited and only child in the family. Following a complicated operation on his oesophagus and other health complications from birth, little Pasha spent a long time in hospital, unable to leave because he needed such a long list of medical equipment and drugs in order to survive. That was until BCH came to the rescue and provided all that he required at home. Pasha not only needs medical equipment but also medication and regular disposables such as gastro stoma, syringes, catheters and bandages and all of this is provided by BCH. Most families do not have the means to acquire the costly equipment to enable a child to live at home with their family or the skills to look after the child. BCH is able to provide equipment, disposables and training for parents/carers. All the hospice’s services are provided free of charge.
Everything that Pasha needs is provided through fundraising and sponsorship. BCH has its own fundraising department set up and funded several years ago by Friends of BCH (UK). The nurses feedback information on what is necessary and the fundraisers approach potential sponsors or find other ways of raising the money. The fundraising team also raises public awareness. There are plenty of people willing to help; the trick is knowing how to find them.
Valentina has been visiting Pasha since he came out of hospital, over two years ago, with a gastro stoma. He is now able to eat normally and does not have to rely on all his nutrition being fed through a tube but chewing and swallowing are difficult because he is not used to it so, in addition to his normal food, Pasha is given jars of special food by tube to help him gain weight. Of course, this is not cheap, it costs on average £50 per week which is a small fortune in Belarusian terms.
Grandmother also helps. ‘I come to look after Pasha so that his parents can at least have some time off,’ she says. ‘Sometimes I give them the keys to my flat so that they can go there and get a good night’s sleep. Pasha needs feeding every two hours, night and day. They get worn out.’
While we are talking, Pasha is all smiles, toddling slightly shakily around the flat and spreading his toys everywhere like children do. I can’t make out what he says but his parents and grandmother can. Pasha looks like any other child but perhaps just not quite as advanced in his walking. It is not until the nurse checks the feeding tube protruding from his stomach that one realises that there is something different. ‘When he had a tube down his throat, other children and even their mothers were wary of us,’ continues his grandmother, ‘I still find it hard to believe. He would toddle up to other children in the sandpit and the mothers would immediately call their children out as though he had something contagious. It was hard.’
Like all the BCH nurses, Valentina keeps a diary where she notes all the details and observations of her visit. Last time Pasha had gained 200 grams which is quite an achievement for a little chap like him. Valentina takes Pasha’s pulse and blood pressure and listens to his chest. His mother and grandmother seem to hold their breath at that moment, praying for a good result. ‘Are you sure everything’s clear? He definitely has a bit of a cold.’ ‘Let’s have another listen, just to make absolutely sure,’ says Valentina. She knows that everything is as fine as it can be but it is easier to convince the parents if she checks him a second time.
The visit has taken almost an hour. Now off to the next family.
At the next apartment on the list, Valentina goes in alone. ‘This child is seriously ill and her mother doesn’t want anyone else coming into the flat. She doesn’t want to talk to strangers.’ But she does talk to Valentina because Valentina has become a family friend. Knowing how to talk to parents, to find the right words in these situations is not an easy task but Valentina has the ability to put parents at ease and provide comfort and practical advice. Twenty minutes later she re-emerges. ‘OK,’ she says, ‘Let’s go back to Baravlyany.’
On the way, Valentina tells me about Yuri, her third patient of the day. We arrive at the flat and meet Yuri and his mother.
‘The pregnancy seemed to be going normally. A day before he was born I had a scan and got full marks, everything was fine,’ says Yuri’s mother, ‘the birth wasn’t particularly difficult.' Three days after he was born, Yuri started having muscular spasms. He was taken first to Intensive Care then he spent another month in the maternity hospital with his mother. Yuri is now 6 years old but he can’t walk or talk and he is plagued with sudden strong convulsions. Expensive medicines that his parents purchase from Italy help a little. Yuri comes to BCH for therapy and massage.
Yuri has a little brother, Seriozha who goes to day nursery. The grandparents do not live in Minsk, so the parents try to cope on their own. They work in shifts so that there is always one of them at home with Yuri. His father is a fireman and his mother works part-time as a nurse. ‘I expect I find it a bit easier than some mothers to carry out medical procedures for my son but, even so, to begin with, I felt at a total loss.’ ‘Is Yuri just about to eat?’ asks Valentina, glancing at the feeding bottle on the table. Yuri will eat anything that can be pureed or grated, even chocolates. He has a good appetite. ‘He eats all sorts of meats including rabbit and goose, all home cooked,’ explains his mother, ‘but we just can’t get him to put on weight. We have to buy him trousers with a waist cord in order to keep them on his thin little middle. Even his socks fall down.’
It has proved difficult to find a wheelchair for Yuri as he needs to sit at a particular angle and he cannot sit for long and there is also the ever present threat of sudden convulsions. Yuri's parents have to wake him up two or three times every night to care for his needs. However, Yuri is quite content in Valentina’s arms. She checks his statistics against the last visit. Nothing has changed. Valentina tells his mother, ‘The doctor is going to prescribe some special food for Yuri but we need to make some tests first.’
The sun has set by the time we take our leave, it’s already 6.30 pm. Valentina’s working day has lasted for 10 hours. ‘It’s not far to go home from here,’ she smiles, ‘I live in the Baravlyany area.’ Valentina has a family and so won’t be sitting down and relaxing after her day’s work. Tomorrow there will be more home visits to make but as she said at the beginning, ‘I decided to give working at the Belarusian Children’s Hospice (BCH) a try and now simply cannot imagine myself leaving’.
A few numbers: In 2016, BCH made regular visits to 206 families, of which 123 live within Minsk and 83 in other areas of the country. BCH’s full time staff includes 4 nurses and 1 carer.
Friends of BCH supports BCH nurses' salaries
All the children’s names have been changed