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Project stories 8. Fighting for children’s life

12 / 03 / 2020
Category: Project News

 

The cross-border projects are not just indicators, budgets, reports and payments. Although these are their inseparable elements, above all each project hides the specific ideas, values and dreams of people implementing it, as well as the stories of those who benefited from its implementation.

We want to bring some of them closer to you by the "Project stories" - the cycle which will present this more human (but also animal - as in the 1st episode) dimension of our selected projects. We invite you to reading.

Arseny and his family live in Lahišyn, a small urban village in Pinsk district, Brest oblast in Belarus. Arseny is the youngest child in the family, he was born 10 months ago – the parents were happy to have the baby despite of some rare fetal abnormalities detected during the pregnancy. From the very beginning they were determined to do whatever is in their power to fight for the life of their son. And it was a conscious choice of the family.

After the birth Arseny was diagnosed with Pfeiffer syndrome, an extremely rare genetic disease. Due to mutations in his genes, the boy’s bones cannot develop normally, which can cause various grave consequences for further growth and development of the child.

Pfeiffer syndrome affects one in 100,000 newborns. Such special patients are nursed first at intensive care, then in the department for premature infants. These babies often need specific care and treatment as they can breathe and receive nutrition only through special medical equipment. Lives of these little patients many times depend on continuous supply of oxygen.

This example is just one of many complex medical conditions that doctors of Brest Oblast Children’s Hospital face in their work every day. It is extremely important for young patients to receive high quality medical care, including palliative care. Moreover, the parents experiencing children serious diseases are also in dire need of psychological counselling.

Every year there are more and more children with difficult diagnoses, who need professional medical care. In 2016 there were 84 such children in Brest Oblast, whereas in 2019 the number has nearly doubled and is 160. Hospitals did not have stationary palliative wards in their intensive care unit.

Children hospitals from Brest (Belarus) and Łosice (Poland) together decided to create better conditions for their little patients. In Brest Oblast Children's Hospital will conduct the modernization of the oxygen supply system and major repairs in the oxygen station room together with new accessories necessary for the station functioning. The hospital in Łosice will obtain specialistic equipment for the qualitative diagnosis of neoplasm formation and heart diseases. Additionally the exchange study tours for Belarusian and Polish doctors will be also organized, including workshops on working with sick children. Trainings and experience-sharing are seen as a very important element in the quality of medical services, the internships will allow doctors to share their knowledge, learn from their colleagues and improve the qualifications of medical personnel.

The work of the intensive care units, surgery blocks and newborn nursing units (for premature babies) directly depends on the oxygen supply system. The project will help to expand the range of services rendered by the hospital, it will also provide help to more patients - says Siarhei Koushyk, the head physician of Brest Oblast Children's Hospital.

The modernization of the oxygen system for Brest Oblast Children's Hospital have already begun. There are 5 new stationary places for palliative care with special medical equipment today. A club of psychological support and counselling for parents of young patients has being created - the activities involve the relatives of sick children, volunteers, psychologists and other specialists.

At the age of 10 months babies begin to actively explore the world around them, so Arseny does too - he reaches for toys and tries to smile at his mom. Arseny’s case is extremely rare, but even in this situation he and his family should receive the best possible support in their fighting for life. They are full of hope, that doctors will be able to improve the quality of their son life as well as of hundreds of other children and families. Thanks to the relations with other parents in the same situation and psychological support from the hospital they strongly believe their family can be happy again. Patients in palliative care can suffer from severe and incurable chronic diseases, but if they get appropriate medical care their life expectancy can be much longer.

Thanks to the financial support of the European Union, the project titled ”Better Access to Medical Services in the CBC Region” is being implemented within the Cross-border Cooperation Programme Poland-Belarus-Ukraine 2014-2020.

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