The story of the spouses Valentina and Anton Pavlyukov touches to the core and does not leave indifferent for a long time after. Their long-awaited daughter with an unusual name — Photinia — was born without the opportunity to see this world like other children.
The parents learned that their daughter was blind when the girl was two months old. It turned out that Fotinia had a rare diagnosis — traction retinal detachment, the cause of which could not be determined by any doctor. Our correspondent Alena Zolotukhina talked with the girl’s mother Valentina and found out how she and her husband are fighting for their daughter’s eyesight.
Valentina and Anton Pavlyuki were looking forward to the appearance of their daughter. They came up with the name of the baby during their honeymoon, when they were vacationing in Cyprus. After visiting the temple of St. Photinia of Cyprus, the couple were imbued with her story, and Valentine came up with the idea — if they have a daughter, name her after the saint.
The pregnancy proceeded well, without problems, and only at the 37th week did troubles begin — the expectant mother fell ill with coronavirus with all the symptoms. In addition, in the third trimester, Valentina was diagnosed with polyhydramnios, but doctors say that neither one nor the other could cause the terrible diagnosis that was found in their newborn daughter.
Fotinia was born on time, with a weight of 2880 grams and a height of 50 cm. Valentina associates the first month of motherhood with pleasant troubles. The problem that worried the woman at that time was breastfeeding: Fotinia could not learn to eat on her own, and Valentina categorically did not want to transfer her daughter to a mixture.
The girl was born with a congenital pathology — stridor (narrow nasal passages), which is why it was difficult for her to breathe and suck in breast milk, she quickly dropped her breast, did not eat enough and did not gain weight. The girl breathed loudly, sniffed, and cried, on the contrary, quietly, almost soundlessly. Usually, the stridor passes as the baby grows up, and it was: gradually Fotinia became better, and Valentina continued to enjoy motherhood. That their family would have to worry later, she did not even know.
— Newborn babies see dimly, so the first month is not an indicator. The doctors looked and said that the eyes were normal. We learned that my daughter couldn’t see when she was two months old. We went to the hospital because of suspected bronchitis. If it were not for the stridor, they would have been treated at home, but because of it, any cold could go to the lungs — we needed to rule out pneumonia. For two days, the head of the hospital came to us personally and examined Fotinia. During one of the examinations of the eyes with a flashlight, she said that she did not want to scare me and that she was not an ophthalmologist, but Fotinia had a problem, her daughter’s eyes needed to be examined deeply. The manager recommended that we go to Barnaul, — says Valentina.
Valentina could not even imagine what the result of the examination would be. The young mother thought: maybe her daughter has squint, myopia or hyperopia, but the doctors diagnosed cataracts in both eyes, recommended not to hesitate and urgently have an operation.
The diagnosis frightened the young parents, they decided to examine their daughter with another specialist, suggesting that the ophthalmologist could be mistaken. In Novosibirsk, the family signed up for an examination at the MNTK.
— We came to Novosibirsk for examination at the institute. After 2-3 hours of waiting, my husband and I began to get nervous and could not understand why the doctors were looking at Fotinia for so long. We went from office to office, we were asked questions: was someone born with blindness, was I sick in the first trimester. A consultation was held, the doctors called their colleagues in Moscow and Kaluga. It turned out that Fotinia did not have a cataract, but completely transparent lenses — at that moment I thought: it’s good that we did not start the operation in Barnaul. But the further words of the doctors shocked me: Fotinia has a very rare case — traction retinal detachment in two eyes. The situation is difficult, there are no specialists in Novosibirsk who work with such diagnoses. The only doctor who can take on our case is in St. Petersburg, and we should contact him, ”says Valentina.
Remembering that day, the Siberian woman says that she could not accept what she heard, it could not fit in her head, for which her baby got such misfortunes.
— It is impossible to describe, the ground was leaving from under my feet, and my heart was breaking, I screamed from the unbearable pain in my chest. How did this happen to our daughter? Throughout the pregnancy, I felt good, no one in our family was born with blindness, my girl is healthy in all respects, except for the stridor, but it will pass over time. How do we get to this doctor? We are ordinary people, and he is the only doctor in the country who performs such an operation — it seemed impossible to get an appointment with him, — Valentina shares her pain.
The head of the family was the first to pull himself together, managed to find the right words to comfort and support his wife, saying that you need to get together, believe in the best, now they really need their daughter
Anton took on the trouble of looking for a connection with the doctor. Miraculously, he managed to find the personal phone number of the doctor — Arthur Baranov. He picked up the phone, listened to Anton and asked to send certificates and test results to the post office, promising to give an answer. The couple updated their mail every minute until they received a letter the next day.
— I think I learned it by heart. The doctor said that the situation is really difficult, the case is rare, the chances of restoration of vision are small, but he is ready to fight for the health of our daughter. We have little time — we need to have time to go through all the stages of the operation up to six months, maximum — up to a year, while the child is growing, — says Valentina and adds that the doctor turned out to be a responsive person and was imbued with their story.
One operation costs 120,000 rubles, not counting flights, accommodation in another city, medications and the rehabilitation period. Neither morally, nor financially, Anton and Valentina were not ready for what happened. Fortunately, the spouses had accumulated a small amount — 90 thousand rubles for a mortgage, with which they began to fight for the health of their daughter. In addition, Valentina’s sister organized a collection — caring people helped to raise the required amount, but this is just a drop in the ocean. Ahead of Fotinia and her parents are a difficult journey and several operations with an interval of one and a half to two months.
Because of the stridor, Fotinia had a risk of not getting out of anesthesia — already in St. Petersburg, Valentina was warned by the anesthesiologist, having listened to the girl’s breathing. The woman tossed about, did not know what to do, and did not understand if an operation was possible in this case: the threat to her daughter’s life hung on both sides. The absence of surgery in the future can lead to an increase in eye pressure, which can also end tragically. After discussing the situation with the surgeon, Valentina nevertheless signed a document that the parent takes responsibility for the child’s life.
Two weeks ago, Fotinia underwent the first surgery on her left eye — the doctor removed the girl’s lens and scars that had formed on the retina, preventing her from taking the required shape. Now the main task is to prevent scars from reappearing and to avoid hemorrhage. This can only be tracked by surgery.
— When I gave Fotinia to the operating room, I tried not to cry, but this is almost impossible. I prayed. After the operation, the doctor did not go into the ward and did not say how it went. My daughter was operated on not in the stream, but on a separate day for several hours. The surgeon is tired, he also needs to recuperate. I worked up my patience and waited. The daughter was brought in in a serious condition — because of the stridor, she could not breathe. It was a catastrophic day, Fotinia had three severe attacks — she did not breathe, turned blue, I ran out of the room screaming in search of nurses, — Valentina recalls those terrible minutes after her daughter’s operation.
Three days later, the girl recovered from anesthesia — now Fotinia feels better.
— The doctor does not give us predictions. Many desperate mothers pass through him, he does not want to reassure anyone, he only says what he is doing today and what the next step will be. There is no talk about restoring vision yet, the most important thing is to preserve the eye as an organ. Later, perhaps, we will be able to find a technology that will allow us to restore the eyesight of our baby, ”says Valentina. — I am sometimes asked why we did not go on a quota operation in Moscow or Kaluga. Explaining: Photinia would have both eyes removed and a prosthesis fitted. Our doctor is fighting to preserve Fotyushe’s own eyes.
An operation on the right eye is scheduled for June 7th. How many such operations there will be in the future is impossible to predict. The spouses have already begun to prepare and tune in to the next stage. While Fotinia is with her family at home, in Biysk. Valentina says that her daughter has finally started to fall asleep normally and she has an appetite. Parents and grandparents surrounded her with care and love.
— If we had not performed the operation, we would have lost our daughter. It’s scary to think about it, scary to say it out loud. Sometimes it seems to me that everything that happens is a bad dream and I just need to wake up. It is difficult to find strength in myself, but my husband helps me, many caring people pray for our daughter. Fotinia feels my tears: if I start crying, she cries too, but sometimes it’s impossible to restrain myself — I go to another room, and my husband is with my daughter. Once I had the thought that the difficulties that Fotinia is experiencing fell on her because of a complicated name, but my husband says that this is not so — we have a special girl, and for some reason God sent us such trials. We are a believing family, and we believe in the best, — says Valentina Pavlyuk.
