October 02 2020
Elmira and Ahmed were married in 2013. and many wanted to have a child to make their happiness even fuller.
Three years passed and a child never showed up. The young woman was worried about what her relatives and her husband would think of her. Islam saw motherhood as a gift, and she could not conceive. She feared she would be called “barren,” condemned, and pitied. We live in modern times, but with old-fashioned prejudices. And Elmira and Ahmed grew up in traditional Turkish families, where the atmosphere is influenced by customs and religion.
They started going to doctors and hospitals and doing various tests, trying non-traditional methods such as herbal treatment… They almost lost hope when the miracle happened. Unfortunately, two miscarriages followed. Elmira became depressed, closed in on herself.
The family decided to seek help from medical specialists in reproductive clinics abroad. They never had an in vitro procedure, as the young woman unexpectedly became pregnant for the third time. The joy, however, was too short because the pregnancy turned out to be problematic. The doctors informed the couple that the fetus was very small and was not developing normally. The child was found to have heart complications and malformations of the central nervous system. The prognosis was poor, but future parents relied on innovations in modern medicine and believed that there were ways to cure the child’s injuries.
Angela was born in December 2019, only two kilograms and 44 cm tall. Elmira and Ahmed named their child after an angel because it was long desired and awaited.
The problems appeared as soon as they heard her voice for the first time. The mother could not feel the happiness of the first unforgettable moments with the baby, the first hug, because there were many injuries and anomalies – no anus, there was a cleft palate, no sucking reflex, there was signs of respiratory failure, which necessitated his placement on mechanical ventilation. The doctors said that the child would not live and it would be better for the parents to give him up…
Elmira and Ahmed could not imagine going home without their little angel. They were ready to give all their love and attention to the child, despite the severe medical sentence.
Angela underwent numerous interventions and due to difficult nutrition and unsatisfactory weight gain, a nasogastric tube was placed – for artificial feeding. There was also a seizure syndrome – epileptic symptoms.
At the moment, the family is forced to live in the capital with accommodation, as there is no appropriate medical and specialized care for the child in the settlement where they come from. It is necessary to give him oxygen with a concentrator due to breathing difficulties.
The family contacted the For Our Children Foundation in this difficult situation, seeking support. The case was taken over by senior specialist Early intervention Raya Tsvetanova. She met her mother in “Pirogov”, where Angela was hospitalized once again – for a gastrostomy / surgical opening of a stomach opening so that she could eat due to a weak swallowing reflex /. Parents seek emotional support, as well as help to purchase specific equipment – an oxygen therapy device, as they use one for rent. The oxygen concentrator is needed by Angela to improve breathing, reduce shortness of breath and the risk of developing severe long-term complications.
Elmira shares that raising a child with specific health conditions at home brings many risks and worries. Without a supportive environment, parents would not be able to meet their child’s needs.
With our assistance and the immediate response of the BCause Foundation, the device was purchased and provided to the family.
The desire of the parents is not to prolong the years in the child’s life, but to fulfill the years with life.
“It doesn’t take much heroism to love.” – the words of Elmira, which summarize the power of a mother’s love for her child.
Our colleague Raya Tsvetanova shares that there are no children’s hospices for palliative care in Bulgaria. There are some abroad, but in our country there is no support for the parents of children with severe disabilities. There is still an understanding that caring for severely disabled children should focus only on their physical condition and is reminiscent of growing a plant. And these children, like everyone else, have the right to a childhood. They must be given the opportunity to be children – to play, to study, to make friends.
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