Dilyara has found out about our fundraising event and was eager to share her testimonials. Dilyara and her family have greatly benefited from the support of the Children's Hospice.
KT: Dilyara, why did you contact the Hospice?
DS: After my son was born, he has spent 4 months in the department of intensive care. He was diagnosed with atresia of the larynx which is a very rare condition. The doctors managed to make the first unique operation, so the baby survived. But in order to allow my son to live a more or less normal life, we needed one more surgery - the reconstruction of the larynx. And we have been looking for a long time for a place to do this operation. In Russia no medical doctor has experience in such type of surgery. After 4 months in the intesive care, my son was transfered to the department of pediatrics, so I was able to be there with him all the time. I was learning how to take care of him, I was getting to know my child. Previously when he was in the intensive care I was able to see him only several times a week. My baby required special care - sanitation of tracheostomy (sputum collection and removal), feeding through the nosal tube, change of the special tube in his throat that was helping him to breathe. This was not how I imagined motherhood. I had so many questions and noone could really answer them.
All the procedures required a lot of additional equipment and different supplies such as filters, desinfectans, tubes. Everything was very expensive and extremely hard to find! My husband has been looking for everything himself. Everything was extremely hard to get, you had to spend hours going to different remote places to collect all the materials. We were under a lot of stress all the time. In our local hospital the doctors have never seen a child with tracheostome before. Doctors were asking us a lot of questions, they were clueless, and they advised us to contact the Children's Hospice. Later a coworker of my husband told him, that she received a lot of support with the supplies and other things from the Children's Hospice. We did not have much hope.
We did not receive the answer from the Hospice right away. We knew that the ressources of the Hospice are limited. My Lord, we are so grateful that they answered us... They have appointed us a curator. We had a meeting and the curator made a list of everythng we needed. The people from the Hospice had a lot of experience and answered so many of our questions. The medical doctor from the Hospice visits my son Philippe regularly. Tracheostome increases the risk of infections, because the air goes straight to the lungs, so it is risky to take my kid to the hospital. Apart from a doctor who could visit my baby at home, the Hospice organised us a meeting with neurologist, resuscitator, allergist and physiotherapist. The Hospice gave us aspirator, catheters, napkins, filters and more... I could not hold my tears when I have opened the package that they sent us. We are so grateful... The Hospice gave us hope. I was able to spend time with my son instead of running around the city and looking for supplies. We are so grateful... The resuscitator from the Hospice saved my son's life. It was the new year's eve and we were changing the tube in my son's trachea. We could not get it right and my son started to choke. We called the ambulance, but they were not able to help us, they did not have the tubes of the correct size for babies. The resuscitator from the Hospice arrived within an hour and saved my son's life... It was a miracle.
KT: Dilyara, thank you so much for sharing this... I can't even begin to imagine what you had to go through... Tell me, apart from the Hospice, was anyone else able to help you? Did you get any support from the Government?
DS: As I have already told you, the local hospital had little experience with such cases. As for the governement, it is complicated. Collecting all the necessary documents takes a lot of time. And I spend 24 hours with my baby, because he is constantly at risk - something can block the tube or he can get it out. We hardly ever leave the house, otherwise we need a special portable device to suck out liquid and an emergancy kit for resuscitation procedures. Collecting all the documents and facing the indifference of bureacrats is so tiring and painful. According to the law, the governement was supposed to sponsor the treatment for our child abroad. We did not know about it and found out this information thanks to the Children's Hospice. Our local hospital and our surgeon had no idea about this opportunity. In order to have this support from the government, we had to prepare a massive file. And then it turned out that the provided documents were not enough! And they made us go to the hospital for an additional examination and painful procedures with anesthesia. Our baby is constantly on anesthesia and additional exposure to painkillers could lead to a risk of neurological diseases. We had documents from our surgeon, one of the best in Russia in his field, we had documents from our doctor, we had proof that our baby is the only child in Russia who is alive with such condition! And all of it was not enough...
When during my pregnancy I found out that my baby will be born with the atresia of the larynx, all the local hospitals refused to accompany me for the delivery. When I went to a big hospital that specialises in cases similar to mine, they offered me to terminate the pregnancy. They said it will be easier for me and my husband, and for the baby. We did not chose the simple way. But I can't say that our way is torture. We have a wonderful baby and he adores life. He makes us very happy. Recently he started to give us hugs, he sends us kisses and he said his first "MAMA". All the doctors in Russia believed that this would never be possible. Thanks to the Children's Hospice we found new friends with inspiring stories.
KT: It is truly a miracle... Did you have any financial support from the goverment? Did you maybe have a private medical insurance?
DS: Government gives us 50 euros per month. Disability registration takes a lot of time and requires a lot of papers as I have already told you. Besides, when we found a good doctor and received positive news, we decided we will not go thtough the disability registration. We have contacted the Ministry of Health asking to finance the treatment of our child abroad. We waited for 2 months for an answer. They offered us to do an additional medical examination. Unfortunately, burecracy does not take into the account the fact that when you deal with sick children, you need to act fast.
KT: If you need to summarise, how did the Hospice help you?
DS: Oh that would be a long list... I will try to go through the major things: psychological support, medical equipment, medical supplies, organising meetings with different specialists, most of them could visit us at home, they provided us a nanny, so I could do some stuff around the house like cooking or cleaning. The Hospice organises different fun activities for children. I did not manage to participate in these activities with Philippe yet, but it is precious. On his birthday the Hospice gave my son a kick scooter! And today he can ride it! I also must say that everyone working at the Hospice is so nice and supportive... Having a sick child can be an isolating experience. Your friends stop calling you, because they do not know how to help. The Hospice always organises different events like concerts that brings the parents and their children together. Yesterday I got a call from the Hospice. I was told that the supporters of the Hospice are offering the mother's of Hospice patients a session of massage. I have registered for the session. I am looking forward!!
KT: That is truly wonderful! How is your son doing now? What are your plans?
DS: In July my son got a larynx reconstruction surgery at CHUV, in Lausanne. Our doctor is the best in Europe. Our friends and different charity organisations helped to collect the money for the surgery. The Hospice is focusing on the palliative care. Now my son can breathe through the nose and mouth. He said his first words. He has one more surgery to go and then he can be discharged from the Hospice. We believe that in 5-6 months from now we will not require help anymore and my child will be able to live a normal life.