"I was so sick, the doctor finally put me on antibiotics," my friend told me. This was at a party Fayoz and I were attending back in our dating days.
I interpreted this for Fayoz, fingerspelling the word "antibiotics."
"What are antibiotics?" Fayoz asked me.
"You know what antibiotics are," I replied.
"No I don't."
"Yes you do. A-n-t-i-b-i-o-t-i-c-s"
"I don't know what they are," he insisted.
"You...don't? Antibiotics are how you went deaf."
There was a stunned pause, then:
"How did I go deaf?"
Antibiotics isn't really how Fayoz went deaf. It's just a part of a story that leads me to believe it was in God's plan for Fayoz to be deaf. Fayoz had been deaf for 24 years before knowing the reason he was deaf. Can you imagine that? His parents thought they had explained it to him, but with ASL being their 5th language, and before that their communication in gestures, apparently there was still a lot of confusion. What he caught from their explanation was he was deaf because of some kind of medicine and so he placed the blame completely on his parents for giving him this medicine until he found the Church of Jesus Christ of Latter-day Saints and forgave them. He realized that although it had been a source of heartache and misery for him, being deaf was a part of God's plan for him and in many ways a gift.
It took me an entire year of asking his parents again and again for clarity before I felt like I grasped the whole story. Even after all of that I tried to write this post and realized there was so much I didn't understand. I went back to my in-laws with my questions, a notebook and recorder and learned. I feel like I'm finally ready to write down this story. Many of the details were new to me, will be new to Fayoz too, and will definitely be new to you.
Deep breath. Here we go.
Why Fayoz is Deaf
On July 25, 1987 Fahridin and Nigora where married in Samarkand, Uzbekistan (then a part of The Soviet Union). It was a perfect match between two very wealthy, well educated families arranged by their parents as required. Nigora was a doctor in training, daughter of the famed biologist, Shavkat Umarov, who had discovered a biological method to safely protect cotton. Fahridin was an economist like his father. Although their parents had arranged the marriage, they greatly respected the couple's wishes. Fahridin had seen Nigora at her graduation, her brown hair nearly to her knees, and known that she was the one. Nigora's parents gave her the chance to meet the tall, dark and handsome Fahridin in a public library, and she gave her consent. She had already turned down 37 men who had sent their parents to ask her parents to marry her.
After eight months of marriage, baby Fayoz came into the world two months premature. Despite his early arrival, he was a normal, healthy beautiful baby boy. He was the birthright son and the pride and joy of his family.
When Fayoz was eight and a half months old, he was developing quickly. He had already started to say "Bee" (mom) and "Dada" (dad). About that time, Fayoz started to get very sick with a horrible cough and his parents rushed him to the doctor.
The diagnosis: bronchitis. The treatment: penicillin shots (an antibiotic) for seven days.
Three weeks after his treatment, his cough was gone and he returned to health, but his parents slowly started to notice some strange behavior. Fayoz used to wake up to even when they walked louder than normal, and now he was sleeping through everything, even the television. Over the course of three weeks a realization dawned on them that there was a change in his hearing. When they were sure, this the realization turned into sheer panic.
Fahridin and Nigora sought out the best care money could buy: Moscow City Hospital in Russia. The young couple dropped everything and flew there to be with their son for two entire months of testing to find a diagnosis.
Over the course of the two months in Moscow they discovered that their son had first stage "nervritte-cochlear." Without therapy he would have progressed through the three stages of the disease until he became totally deaf. They gauged hearing from level 1-4, one being the best hearing and four the worst. Fayoz was at a level two. They informed Fahridin and Nigora that when doctors administer penicillin as a shot, they have to mix it in a solution because penicillin is a solid. Sometimes they will add a little bit of streptomysin to the solution because it is an easy way to keep it from crystalizing, which would make the penicillin inactive and also adds extra strength to the solution. However, being born premature, Fayoz was at high risk, and the combination of the two caused damage in his cochlear nerve.
Although Nigora feels that the nurse should have known this, it's possible he needed the medication to recover from bronchitis. I found an article where a patient was administered streptoysin and penicillin and was returned to health, but the patient went deaf. Is it possible that Fayoz would be dead without this antibiotic? If anyone knows more than me or wants to dig in further, by all means, let me know.
The experts at Moscow drafted a plan that would help Fayoz recover. The treatments included Vitamin B, physical therapy, speech therapy, acupuncture and stimulating the nerve with a cerebrolysin injection. They said that by taking these steps, Fayoz would be able to hear.
To start Fayoz's treatments, his parents flew him to Dushanbe, Tajikistan where Nigora's parents lived (also a part of the Soviet Union). Under the supervision of his grandmother, baby Fayoz spent three weeks in a full service hospital receiving the treatments recommended by the experts at Moscow.
The treatments were doing well and Fayoz's hearing was improving. His parents couldn't be happier and the doctors told them they could safely bring their son home and continue the treatments in Uzbekistan as long they came back to check his progress.
Nigora searched for a skilled acupuncturist in Uzbekistan. She finally found Dr. Kim, a Korean woman with years of experience. In the Soviet Union the government paid for health care for everyone, but to receive better treatment, rich families would shower the doctors with gifts. Some doctors and hospitals wouldn't even treat patients without gifts and money. Nigora's wealthy father sent gifts that were hard to find in Uzbekistan on a plane from Tajikistan for Dr. Kim: rare salami, chocolate and an enormous can of condensed milk.
Dr. Kim agreed to start the therapy to stimulate the nerve. A 7-day therapy, a week of rest, and then another 7 days. This therapy lasted 7-8 months. By this time Fayoz was about a year old, and while he was receiving therapy, Nigora gave birth to a baby boy.
When the therapy was complete, Nigora and Fahridin flew Fayoz back to Dushanbe, Tajikistan to check his progress. They were hopeful.
The doctors ran some tests on Fayoz and came back and came back shocked.
"What did you do to him??" they demanded, "He is completely deaf."
Dr. Kim had not stimulated the nerve, she had killed it. Fayoz's level two hearing (one being the best, four the worst) was now level four. The damage was far beyond repair. He was stone deaf in his left hear and could hear only very loud sounds in his right.
Fayoz was never to fully understand speech, never to follow spoken conversation and never to sing his future wife a love song.
Nigora and Fahridin were devastated. And there was nothing they could do.
Their family didn't understand that the acupuncture, not the antibiotics had been what fully killed Fayoz's hearing. They didn't understand the hope that they had for his recovery and how it had been crushed. Nigora and Fahridin had seen the fate of deaf children in Uzbekistan - they stayed home with their parents their entire life without the hope of being educated or functioning in a job. But they resolved that their precious son, somehow, some way, would not share this fate.
There would be no retaliation for Dr. Kim's mistake. There was no legal way to bring a healthcare professional to justice, no accountability. The couple was not angry, they were heartbroken. They never even told Dr. Kim the result of her incompetency. In fact, Fahridin's cousin later went to see Dr. Kim to treat Trigeminal Neuralgia. Multiple doctors had misdiagnosed her ailment and she died at the age of 43 of brain cancer. Again, there would be no retaliation.
Shortly after this chain of events, Nigora and Fahridin's second son, Parvis, was born. Nine months later, a relative accidentally dropped him on the ground. They rushed him to the hospital and begged for treatment. Knowing the family was wealthy, the doctors refused to treat him unless they returned to their home and brought back money. While they went back to get the money, Parvis died.
I shutter to think that Nigora was 23, a year younger than myself, when all this happened to her. I am in awe of her resilience. When I read this to her, she cried.
I must conclude with some hope, and oh there is so much hope! These stalwart parents and this boy, left without his hearing by inept professionals, rose above the collapse of the Soviet Union only a year later, miraculously found a way to get him an education and finally made the most difficult sacrifice of all: leaving their three young children in Uzbekistan to bring Fayoz to a better life in America.
These are stories of miracles, stories of heartbreak, but most of all, stories of hope. But for these stories, you will have to wait.
I interpreted this for Fayoz, fingerspelling the word "antibiotics."
"What are antibiotics?" Fayoz asked me.
"You know what antibiotics are," I replied.
"No I don't."
"Yes you do. A-n-t-i-b-i-o-t-i-c-s"
"I don't know what they are," he insisted.
"You...don't? Antibiotics are how you went deaf."
There was a stunned pause, then:
"How did I go deaf?"
Antibiotics isn't really how Fayoz went deaf. It's just a part of a story that leads me to believe it was in God's plan for Fayoz to be deaf. Fayoz had been deaf for 24 years before knowing the reason he was deaf. Can you imagine that? His parents thought they had explained it to him, but with ASL being their 5th language, and before that their communication in gestures, apparently there was still a lot of confusion. What he caught from their explanation was he was deaf because of some kind of medicine and so he placed the blame completely on his parents for giving him this medicine until he found the Church of Jesus Christ of Latter-day Saints and forgave them. He realized that although it had been a source of heartache and misery for him, being deaf was a part of God's plan for him and in many ways a gift.
It took me an entire year of asking his parents again and again for clarity before I felt like I grasped the whole story. Even after all of that I tried to write this post and realized there was so much I didn't understand. I went back to my in-laws with my questions, a notebook and recorder and learned. I feel like I'm finally ready to write down this story. Many of the details were new to me, will be new to Fayoz too, and will definitely be new to you.
Deep breath. Here we go.
Why Fayoz is Deaf
On July 25, 1987 Fahridin and Nigora where married in Samarkand, Uzbekistan (then a part of The Soviet Union). It was a perfect match between two very wealthy, well educated families arranged by their parents as required. Nigora was a doctor in training, daughter of the famed biologist, Shavkat Umarov, who had discovered a biological method to safely protect cotton. Fahridin was an economist like his father. Although their parents had arranged the marriage, they greatly respected the couple's wishes. Fahridin had seen Nigora at her graduation, her brown hair nearly to her knees, and known that she was the one. Nigora's parents gave her the chance to meet the tall, dark and handsome Fahridin in a public library, and she gave her consent. She had already turned down 37 men who had sent their parents to ask her parents to marry her.
 |
| Nigora was 22 and Fahridin was 25 years old. |
After eight months of marriage, baby Fayoz came into the world two months premature. Despite his early arrival, he was a normal, healthy beautiful baby boy. He was the birthright son and the pride and joy of his family.
When Fayoz was eight and a half months old, he was developing quickly. He had already started to say "Bee" (mom) and "Dada" (dad). About that time, Fayoz started to get very sick with a horrible cough and his parents rushed him to the doctor.
The diagnosis: bronchitis. The treatment: penicillin shots (an antibiotic) for seven days.
Three weeks after his treatment, his cough was gone and he returned to health, but his parents slowly started to notice some strange behavior. Fayoz used to wake up to even when they walked louder than normal, and now he was sleeping through everything, even the television. Over the course of three weeks a realization dawned on them that there was a change in his hearing. When they were sure, this the realization turned into sheer panic.
Fahridin and Nigora sought out the best care money could buy: Moscow City Hospital in Russia. The young couple dropped everything and flew there to be with their son for two entire months of testing to find a diagnosis.
Over the course of the two months in Moscow they discovered that their son had first stage "nervritte-cochlear." Without therapy he would have progressed through the three stages of the disease until he became totally deaf. They gauged hearing from level 1-4, one being the best hearing and four the worst. Fayoz was at a level two. They informed Fahridin and Nigora that when doctors administer penicillin as a shot, they have to mix it in a solution because penicillin is a solid. Sometimes they will add a little bit of streptomysin to the solution because it is an easy way to keep it from crystalizing, which would make the penicillin inactive and also adds extra strength to the solution. However, being born premature, Fayoz was at high risk, and the combination of the two caused damage in his cochlear nerve.
Although Nigora feels that the nurse should have known this, it's possible he needed the medication to recover from bronchitis. I found an article where a patient was administered streptoysin and penicillin and was returned to health, but the patient went deaf. Is it possible that Fayoz would be dead without this antibiotic? If anyone knows more than me or wants to dig in further, by all means, let me know.
The experts at Moscow drafted a plan that would help Fayoz recover. The treatments included Vitamin B, physical therapy, speech therapy, acupuncture and stimulating the nerve with a cerebrolysin injection. They said that by taking these steps, Fayoz would be able to hear.
To start Fayoz's treatments, his parents flew him to Dushanbe, Tajikistan where Nigora's parents lived (also a part of the Soviet Union). Under the supervision of his grandmother, baby Fayoz spent three weeks in a full service hospital receiving the treatments recommended by the experts at Moscow.
 |
| Fayoz with his grandparents in Dushanbe, Tajikistan. This plate was a wedding gift from his grandmother. |
The treatments were doing well and Fayoz's hearing was improving. His parents couldn't be happier and the doctors told them they could safely bring their son home and continue the treatments in Uzbekistan as long they came back to check his progress.
Nigora searched for a skilled acupuncturist in Uzbekistan. She finally found Dr. Kim, a Korean woman with years of experience. In the Soviet Union the government paid for health care for everyone, but to receive better treatment, rich families would shower the doctors with gifts. Some doctors and hospitals wouldn't even treat patients without gifts and money. Nigora's wealthy father sent gifts that were hard to find in Uzbekistan on a plane from Tajikistan for Dr. Kim: rare salami, chocolate and an enormous can of condensed milk.
Dr. Kim agreed to start the therapy to stimulate the nerve. A 7-day therapy, a week of rest, and then another 7 days. This therapy lasted 7-8 months. By this time Fayoz was about a year old, and while he was receiving therapy, Nigora gave birth to a baby boy.
When the therapy was complete, Nigora and Fahridin flew Fayoz back to Dushanbe, Tajikistan to check his progress. They were hopeful.
The doctors ran some tests on Fayoz and came back and came back shocked.
"What did you do to him??" they demanded, "He is completely deaf."
Dr. Kim had not stimulated the nerve, she had killed it. Fayoz's level two hearing (one being the best, four the worst) was now level four. The damage was far beyond repair. He was stone deaf in his left hear and could hear only very loud sounds in his right.
Fayoz was never to fully understand speech, never to follow spoken conversation and never to sing his future wife a love song.
Nigora and Fahridin were devastated. And there was nothing they could do.
Their family didn't understand that the acupuncture, not the antibiotics had been what fully killed Fayoz's hearing. They didn't understand the hope that they had for his recovery and how it had been crushed. Nigora and Fahridin had seen the fate of deaf children in Uzbekistan - they stayed home with their parents their entire life without the hope of being educated or functioning in a job. But they resolved that their precious son, somehow, some way, would not share this fate.
There would be no retaliation for Dr. Kim's mistake. There was no legal way to bring a healthcare professional to justice, no accountability. The couple was not angry, they were heartbroken. They never even told Dr. Kim the result of her incompetency. In fact, Fahridin's cousin later went to see Dr. Kim to treat Trigeminal Neuralgia. Multiple doctors had misdiagnosed her ailment and she died at the age of 43 of brain cancer. Again, there would be no retaliation.
Shortly after this chain of events, Nigora and Fahridin's second son, Parvis, was born. Nine months later, a relative accidentally dropped him on the ground. They rushed him to the hospital and begged for treatment. Knowing the family was wealthy, the doctors refused to treat him unless they returned to their home and brought back money. While they went back to get the money, Parvis died.
I shutter to think that Nigora was 23, a year younger than myself, when all this happened to her. I am in awe of her resilience. When I read this to her, she cried.
I must conclude with some hope, and oh there is so much hope! These stalwart parents and this boy, left without his hearing by inept professionals, rose above the collapse of the Soviet Union only a year later, miraculously found a way to get him an education and finally made the most difficult sacrifice of all: leaving their three young children in Uzbekistan to bring Fayoz to a better life in America.
These are stories of miracles, stories of heartbreak, but most of all, stories of hope. But for these stories, you will have to wait.
 |
| My little love. |
This is very touching!
ReplyDeleteOh my goodness... How heartbreaking!! And yet it is interesting to learn!
ReplyDeleteThank you, Kylie. This was beautiful. I am sure Nigora felt validated and comforted by your validation. They are beautfiul beautiful people. And it was a long, difficult road. What a long, difficult road to bring Fayoz to you.
ReplyDeleteWhat a beautiful but heartbreaking history. Thank you for sharing it. What a beautiful gift to his whole family (and yours too) to research this and write this. What a lovely gift you are Kylie...and it sounds like his family is just amazing!
ReplyDelete