“Aknur was born prematurely when I was only 28 weeks pregnant,” recalled her mother, Diana. “As her lungs were not yet able to function on their own, she was on ventilation during her first two months, three weeks of which she spent in the NICU. Shortly after we were finally discharged, Aknur was diagnosed with an eye condition linked to her premature birth and had to undergo surgery right away. Following a month in intensive care, she was sent home. However, shortly thereafter, we were frightened to find her turning blue, in addition to constantly crying and struggling to breathe.
While she was initially diagnosed with pneumonia and put on the ventilator again, doctors eventually identified a cyst in her right lung that prevented her from breathing. They told us she would not survive a week, and would remain bedridden for the rest of her life if she did survive. We had already said goodbye to our little girl, but miraculously, her condition improved enough to undergo surgery. After the cyst was removed, Aknur seemed alright for a while, but soon started turning blue again. Doctors told us she had a narrowing in her windpipe (stenosis), and at only four months old, she underwent a third emergency surgery (tracheostomy). The procedure involved creating an opening at the front of Aknur’s neck so a tube could be inserted into the windpipe, allowing her to breathe.
For two years, she had to live with this tube. At first, we took turns sleeping to ensure she did not suffocate. She had to eat through a tube, but soon started gaining weight.
While we were happy Aknur was stabilizing, we were still heartbroken with the thought of her having to live with a tube protruding from her neck for the rest of her life.
Fortunately, a mother in a support group for parents of children with tracheostomies told us about an operation her baby underwent at Sheba. We knew it was our last hope. After some research, we realized Sheba is a very advanced medical center, and believed they could offer Aknur a chance for a normal life.
Initially, we worried it would be difficult to get along in a foreign country where we did not speak the language or had a place to stay, but Boris, our agent, helped us to overcome all the logistical challenges before and after we arrived in Israel, and in particular, supported us when we waited for international travel to resume, as it was almost impossible during the COVID-19 pandemic.
The moment we stepped foot in Sheba, Milana, our medical coordinator, was by our side. We got to know many other Sheba staff members during our stay, and they were all so friendly, kind, and nice.
Shortly after arriving, Aknur underwent a procedure (therapeutic balloon laryngoplasty) to treat the obstruction in her windpipe and allow her to breathe without a tracheostomy. However, when her health did not improve, Sheba doctors discovered a previously undetected congenital condition, which resulted in her windpipe being too soft and weak, causing it to collapse and prevent Aknur from breathing.
It was then that Dr. Carmel suggested a creative solution, which involved implanting a rigid tube on the lining of Aknur’s windpipe to ensure a clear airway is maintained. The procedure was a success, and Aknur can now breathe on her own!
We were treated with great compassion and understanding at Sheba. In particular, I remember when the Jewish Purim festival was celebrated here, we came to the ICU with one bag and left with three filled with gifts and sweets. There is a very different approach to treatment here, and it makes a big difference. When Aknur was in the intensive care unit in Kazakhstan, we were only allowed to visit her for half an hour or an hour a day, so we didn’t even know what they did to her. At Sheba, they make an effort to keep the parents close.
We are very grateful to Dr. Carmel, who always supported us, explaining everything in very clear terms and reassuring us that the treatment would be successful. Thankfully, we overcame all the obstacles on our way and can look forward to better things in the future. Our daughter suffered for four years, but today, thanks to Sheba, she is starting a new life.”
