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- Expert opinion: Anna Yatsulchak, doctor of the Department of Mobile Palliative Care for Children in Kiev
2023 Author: Blake Bradshaw | [email protected]. Last modified: 2023-05-20 16:20
Her house always smells of fresh baked goods, and her Facebook page is replete with photos of desserts. Loose cookies, Christmas stollens, airy cakes and incredibly mouth-watering cakes of all kinds - it's impossible to leave without placing an order after watching all this beauty.
Victoria Mostovenko is very fond of baking. And also to make gifts. But more than anything, she loves her 3-year-old daughter Sofiyka. Together they are desperately struggling with the baby's diagnoses - cerebral palsy and epilepsy. They are fighting for the quality of life, which largely depends on the drugs taken by the child. But more on that later.
Vika dreamed about the profession of a pastry chef since her school years, she even wanted to enter the school with her friend after the 9th grade. But closer to graduation, I realized that in the modern world, a higher education diploma is of particular importance. And therefore, putting aside her dream, she entered the Kirovograd Flight Academy, after which she went to work in Kiev. At first, it was difficult to live in the capital - the salary was constantly delayed, there was not enough money. But over time, Vika managed to find a good job, make friends and meet her love - the future husband of Vladimir.
The news of pregnancy was a great joy for the young couple. Vika dreamed about meeting her daughter, about her smile and first steps, about dresses and bows, about choosing a kindergarten and school. Pregnancy proceeded smoothly, labor began on time, and contractions were regular. Several hours were left before the meeting with the baby. But suddenly Vika lost her labor. At such moments, everything depends on the professionalism of the doctor. Or unprofessionalism, as in the case of Vika. The doctor claims to have followed the protocol. In civilized countries, such protocols have long been forgotten (extrusion by weight, vacuum, forceps). Several precious hours were missed, the Caesarean was done too late. Sofia did not breathe. The brain was severely damaged due to the prolonged lack of oxygen.
The baby lived for the first five weeks thanks to a ventilator. As soon as she regained consciousness, she began to have convulsive seizures. She was immediately prescribed a severe antiepileptic drug. Mom and daughter were able to get home only after 2 months in the hospital. And then an endless marathon with obstacles began - regular hospitalizations, rehabilitation and the selection of anticonvulsants, which for some reason did not help. Later, Vika learned from the same parents about the use of medical cannabis oil for the treatment of children with severe epilepsy. She and her husband studied the topic, consulted with doctors and decided to try. The result was not long in coming. Sofia improved her sleep, appetite, concentration of attention. These factors are very important for the development of any child, and even more so for a baby with cerebral palsy.
The first year I gave all of myself physically and mentally to my daughter, I had neither the strength nor the time to think about myself, - recalls Vika: The second year was the most difficult - a feeling of hopelessness came, my husband and I were one step away from divorce. It took a long time to work on myself. But we managed to keep our family together and learn to live anew.
But not everyone succeeds. What is their secret?
In the awareness of the importance of their own needs. It is very important to learn to listen to yourself and do what fills the inner vessel. When I dip my hands in flour, all problems disappear. There is me and the recipe. Process and result. I get high while baking - this is my resource.
Expert opinion: Anna Yatsulchak, doctor of the Department of Mobile Palliative Care for Children in Kiev
In 2019, my colleagues and I were invited to the Warsaw Children's Hospice for an internship. The hospice patients included many palliative children with refractory epilepsy. To our surprise, many of them took cannabis-based drugs that the hospice itself made using a special program, equipment and different varieties of cannabis. And all this is completely legal! The hospice doctor takes the finished preparation to the patient, whose parents strictly prescribed it to the child and at the same time keep a diary of seizures. I remember a boy with severe cerebral palsy and epilepsy, the number of seizures on the cannabis drug decreased from 72 to 3-5 per day. This is a great result! Among the patients of our service there are many children who need such treatment. But in Ukraine, unfortunately, it still remains illegal.