My name is Ola and I’m 28 years old. My husband is Dominik and our first born daughter is four year old Agatka. Our second daughter, Helenka (or Hela, for short) was born on 22 September 2012. I didn’t have any problems during pregnancy and I gave birth without any problems, one day before my due date. Helenka received full ten Apgar points and seemed like a completely healthy baby girl.
In hospital she underwent standard hearing screening and the results didn’t match correct values. We were informed during hospital discharge that we have to come back again to test Helenka’s hearing. We were a little afraid of it, despite of the fact that such a result may be caused by amniotic fluid still present in ears or some mistake made during the examination.
In Hospital, Wage 3,2 kg, hight 55 cm.
October 5 2012
Two weeks after Helenka was born we went to Audiology Clinic of Institute of Mother and Child to do hearing tests once more. The results were again invalid, although the doctor said that for such a small child they may be incorrect. He reassured us that we shouldn’t worry in advance and told us to come back when my daughter turned three months. I believed him and was convinced that everything will be fine. I would never have thought that my daughter would be deaf. Only Dominik was saying that our baby girl doesn’t hear anything and she’s sleeping so much, because she ?lives in silence?. Soon we started searching on the Internet for the information about invalid hearing tests and places when such medical examinations are performed at the highest level. We’ve found World Hearing Center in Kajetany and we’ve made an appointment to diagnose the problem as soon as possible.
Here are some pictures of us:
November 1 2012
In the morning I visited the ear specialist at Kampinos (A branch of Kajetany) together with Helenka, Dominik and my mom. The doctor examined Helenka’s ears and referred her for further specialist examinations in the facility. The queue was very long, but it turned out that small children had priority, so we were called in very quickly. During the tests Helenka was sleeping and we were cheerfully conversing with technician performing the examination. We all believed the first diagnosis was wrong. We kept asking the technician how the test was going, but she said the doctor will explain everything to us, because she ‘s not authorized to do so. After the examination we’ve returned to the doctor who examined the test results and stated that the child has profound hearing loss. That information shocked us so much we didn’t even know what to ask about. These harsh words were hard to believe. The doctor ordered another test and informed us that Helenka would have cochlear implant surgically implanted. On the same day we were told to visit a specialist and choose the hearing aid, which we did at once. We were very shocked and waited until Monday to verify credibility of the tests, even though we knew those two days wouldn’t change anything. That was a big shock for me. I felt powerless, disappointed, regretful and couldn’t understand why all this happened. In retrospect now I know I couldn’t believe my child is deaf and it was difficult to accept at first. I was still looking for a way to ?save? my child.
The doctor ordered blood tests for me and Helenka in order to identify the possible causes of hearing loss. We wanted to do the blood tests as fast as we could before the following Monday, because this was the day of our doctor’s next appointment. It was difficult, because we couldn’t do the tests anywhere that fast. In the place where they could take my blood, they couldn’t take Helenka’s and vice-versa. What’s even worse than that ? we had to have referral for examination which required tremendous effort to obtain. It took a lot of work and required going across the entire city but we’ve finally succeeded. Pediatrician who ordered all those tests told us if it turned out its cytomegalovirus there might have been chance for recovery. It gave us some hope although we didn’t know anything about this subject. We secretly hoped for cytomegalovirus diagnosis.
November 2,3,4 2012 The following days were hard, we spent most of the time searching for all available information on the Internet. Together with Dominik we were looking for examples of incorrect test results and treatment of hearing impairment in children. We still hoped everything would be all right and that our daughter would recover. The test results proved that me and Helenka had cytomegalovirus antibodies ? I was very pleased because I thought we could find the cure, just like the pediatrician mentioned told us the previous day. Dominik recalled his friend Asia had a 4-year old daughter who was deaf. He contacted them immediately and obtained information from a person who had experience in this matter.
I’ve received message from Asia which cheered us up a lot:
“My name is Asia and I’m Dominik’s colleague, the one with deaf daughter, Weronika. I’m contacting you because I remember how I felt when I found out Weronika had profound hearing loss. I’m aware that it’s not easy for you, but you can’t give in to despair. This is not misfortune. My child doesn’t hear, but when I look at her I’m happy. She’s cheerful, talkative and not in pain. She’s got great friends and is one hundred percent accepted ? that makes her mega confident. Hearing loss is nothing terrifying these days, even though it takes some work to make kids talk and understand. These are not the times when disability results in isolation. Weronika is four and a half year old. She counts, reads and writes names already and behaves just like hearing children. Remember: people listen not only with their ears. After Weronika’s rehabilitation I know how much the children feel even if they have their hearing aids turned off. Talk to her as always, cuddle her on your chest while talking. She’ll feel it. ? Asia borrowed us her daughter’s hearing aids. We were very grateful, because thanks to her we didn’t have to rent or buy those devices, which could have been a huge expense. This gave our two-month child swift possibility to wear them. We only had to wait for calibration and forming of ear molds.”
Asia borrowed us her daughter’s hearing aids. We were very grateful, because thanks to her we didn’t have to rent or buy those devices, which could have been a huge expense. This gave our two-month child swift possibility to wear them. We only had to wait for calibration and forming of ear molds.
On Sunday we visited Asia to obtain the hearing aids and we’ve met her daughter who had a cochlear implant. She looked like a perfectly normal child with nice, smiling face, we didn’t see the implant because she wore a cap (it was winter). Asia was talking to her the same way we speak to our older kid. I even noticed that her daughter was communicating better than Agata. Asia told us about her experience, I perceived her as a nice girl who was even proud of her current situation. She was happy, self-confident, she told us about her child without hesitation. That conversation helped as a lot, gave us hope that we can live with all this and enjoy each day of life in spite of the tragedy.
Together with Dominik we recalled that Helenka had her cord blood drawn. We’ve decided we would try to contact Cord Blood Bank where it is preserved and find out if we would be able to use that blood for hearing loss regeneration. We’ve planned we would call on Monday and see if there’s possibility of doing so.
Today we’ve found few pieces of information about treating hearing loss with cord blood cells on the Internet ? that gave us even more hope and improved our mood. We wanted to ask our laryngologist about it during next visit. We’ve also found information about possibility of traveling to China and treating the hearing loss with stem cell therapy there.