Seven months into pregnancy, Alya’s then parents-to-be have realised that she would have facial anomaly after birth – cleft lip and cleft palate. „The next minute after Alya was born, and the midwives passed the baby to me, I was terrified: she was all covered in blood with a huge hole looming on her face,” recalls Alya’s Mum. “And the first words that I heard from staff were “Wow, it is a baby with the cleft palate.” Although we have been aware of our daughter’s facial deformities before birth, the lack of understanding from personnel of the hospital after her birth was the first reality slap. I was scared and anxious when I saw Alya, and I cried a lot. Nobody told me anything, there was a total lack of support,” add’s Alya’s mother.
After being discharged from maternity hospital, without parents knowing, the girl was transferred to the Home for Medico-Social Care for Children. When the social services called her father to sign an order for accommodation, he denied. It was the doctors’ opinion that the mother could not provide appropriate care for her daughter, and that she will not be able to cope with feeding the baby which will put the girl’s life in danger. After Alya’s placement in a Home for Medico-Social Care for Children, the Center for early intervention was contacted by the project coordinator “Direction Family” with request to arrange consultation for Alya’s parents. Meeting the manager of the Center has encouraged and reassured Alya’s parents of their parental capacity to care for little Alya at home, in a supportive and caring family environment. The Centre has also offered professional support by the team of experts in the Centre. With the help of local NGO, parents contacted Association of patients with inborn facial anomaly who work towards prevention of abandonment of children with facial anomaly and improving the quality of treatment for these children. Alya had an operation and after successful recovery she now eats normally.
Alya’s story shows that the early intervention is essential in prevention of children’s separation from their parents. It starts with informing about the child disability and continues with psychological and emotional support to parents immediately after the birth. Understanding and acceptance of the child’s diversity, as well as supporting the notion that children should grow up with their own homes, not in children’s homes, is crucial to it.