Daria Primakova was born on 3 November. The day before she arrived her mother’s blood pressure rose dramatically. In the first hours after her delivery, all the signs were that the baby seemed well but by the second night she wasn’t sleeping and was crying a lot. On day 3 mother and baby were allowed to go home but another three days later Daria’s mother noticed changes in her daughter’s facial expressions, her mouth and her eye were pulled to one side.
Daria’s parents took her back into hospital for tests which showed a growth in the neck area of her spine. On day 11 of her young life, Daria underwent surgery and to remove the growth. For a while she seemed to have improved even though she had to be fed through a nasal tube for a further two months.
When Daria was 3 months old, she started having fits and spent a lot of time in intensive care. After her second birthday, Daria’s condition took a nose dive for the worse and she was again admitted to hospital. After another two months in hospital her parents came to the Belarusian Children’s Hospice and asked us to take their family under our care.
Currently, Daria’s condition is stable. The hospice has provided all the necessary equipment for her care at home including a vacuum aspirator and an oxygen concentrator. Twice a week a hospice nurse visits Daria at home and once a week a hospice carer goes to their flat so that Daria’s mother can go out.
Unfortunately, Daria’s state of health is not good. She cannot breathe without an oxygen concentrator, she can only sit if supported and she has to be fed through a tube. However, she does live at home with her family and this is thanks to the Belarusian Children’s Hospice. Daria’s mother, Natalia, is now expecting her second baby and she and her husband hope very much that the hospice will always be there for them because they could not cope on their own with the care of their first daughter.