29 June 2010
Ira’s parents didn’t expect much from the trip to Saint-Petersburg City Children’s Hospital #1. The girls wasn’t supposed to live so long with the initial diagnosis of Fallot’s tetralogy, which means 4 cardiovascular malformations. Ira’s family lives in Tashkent, where they don’t have doctors who’d be able to fix disorders of such difficulty. Ira was discharged from a birthing home with no hope for survival.
Some friends advised Ira’s parents to send the documents to the Saint-Petersburg City Children’s Hospital, and the doctors said they could help. The same friends helped with the trip costs, and all of the family’s money was spent on living in an expensive city of St. Petersburg. But in the hospital they were told that Ira can’t go home without a surgery.
The very first examination determined the the initial diagnosis was wrong and that there is hope. Ira has lived too long with her disorders, and now they need to be corrected urgently. The miracle of Ira’s survival could end any minute. Her condition is estimated as critical. Doctors need to conduct diagnostic probing that will let them see the disorders and find the best way to correct them. Pre-surgical examination and the surgery costs 284,000 rubles (9085 US dollars).
Ira’s mom says:
Even for an adult it is extremely hard to live with constant short-breathing, fatigue, chest pains. Our daughter has learned to deal with all those symptoms since she was born. She is very enduring, never complains, even when the pain is impossible to bear. The most difficult thing for her is to always be alone, to never have friends. She can’t play like all the other kids do. In Russia children with congenital heart disorders can have a surgery and live a normal life, without any restrictions. Ira is our only daughter, she is a long-awaited child. I had her when I was 34 years old. It is so unfair that she has to suffer only because she was born in the wrong country!
Ira has always been very quiet, even apathetic to everything around. After we came to Russia she changed. I can see that she shows more interest to life, she likes to talk about the future. Ira believes the doctors when they draw pictures of changes they will make in her heart to fix it. She doesn’t realize what it means to be a foreign country patient. Ira thinks that her life depends on the doctors, and not on her parents’ income. That puts us in an unmerciful situation. Our child could die not because she can’t be cured, but because we don’t have the money.