Today we repeated ABR (Auditory Brainstem Responses) test and again it proved Helenka’s hearing loss. What will happen next, how her life ? and ours ? would turn out? We were in deep shock, it was hard to believe in all this…
November 5 2012
On this day we’ve prepared a whole list of question for the laryngologist, unfortunately the doctor’s answers were short and casual. We needed some emotional support at the moment, some hope that everything would be all right, but his attitude deprived us of that hope. I won’t recommend that doctor, nothing justifies his behavior. He said that we have to visit Children’s Health Institute for information about cytomegalovirus. I asked about the correct ward to go to and he responded that we can check it out on the Internet and mentioned he’s in a hurry because he’s going on vacation and has to leave soon ? we should direct any questions to the substitute doctor he’s sending us to.
Today we repeated ABR (Auditory Brainstem Responses) test and again it proved Helenka’s hearing loss. What will happen next, how her life ? and ours ? would turn out? We were in deep shock, it was hard to believe in all this… On this day we’ve prepared a whole list of question for the laryngologist, unfortunately the doctor’s answers were short and casual. We needed some emotional support at the moment, some hope that everything would be all right, but his attitude deprived us of that hope. I won’t recommend that doctor, nothing justifies his behavior. He said that we have to visit Children’s Health Institute for information about cytomegalovirus. I asked about the correct ward to go to and he responded that we can check it out on the Internet and mentioned he’s in a hurry because he’s going on vacation and has to leave soon ? we should direct any questions to the substitute doctor he’s sending us to.
It’s hard to comment on that kind of behavior, because we cannot find proper words for it… fortunately second doctor was much more competent and behaved like proper human being. She answered all our questions and her answers left us with no doubt, told us we have to go to a geneticist to check the blood and see if it’s not a genetic disorder. She also mentioned we could see a speech therapist right now. We were able to deal with every matter on the spot. The results of genetics testing would be available after four months ? very long time. Speech therapist was also very nice, asked many questions, for example she wanted to know how severe the hearing loss was, I told her it’s probably ninety decibels. Upon hearing this she took out some instruments, like the drum and tried to show me how Helenka reacts to loud noises. During the procedure, the therapist pointed out when the baby started to suck her pacifier harder or moved her hand etc. I was surprised because I was previously assured our child is completely deaf. A few moments later I’ve shown the ABR results to the speech therapist and his diagnosis proved again that Helenka couldn’t hear those noises and it had to be pure coincidence. Then we came to visit the audiologist who was supposed to adjust hearing devices and test how the baby reacted to them. We had waited an hour in the queue and then Helenka woke up and was hungry. He inserted the hearing aids into her ears, placed her in sound-proof booth and tried to identify if she heard something while wearing them or maybe they were too loud. In my opinion this test wasn’t reliable, the baby was crying because it was hungry, so the responses might have been different. We did first impressions for custom ear-molds and we had to wait two weeks to obtain those. We asked a geneticist, two ear doctors and a speech therapist if they knew something about treating hearing loss with cord blood but they all stated they knew nothing about it…
This evening we’ve phoned the doctor who addresses all the questions. Talking with him gave us hope! He told us we should meet and have a calm conversation. We arranged to meet on November 13 at the blood bank. Today we’ve paid a visit to the Institute for the Deaf at Trzech Krzyzy Square and managed to meet the director who invited us for a chat. We’ve told him about our situation and he pointed out what the deaf person’s life looks like. He said he would sign Helenka up for early supportive therapy where specialists would help her with her development. We were of course interested in that and he was supposed to call us.
November 6 2012
Today I’ve tried to arrange a visit at the Children’s Memorial Health Institute. They said Helenka’s big enough and we definitely have to come quick. then fixed the date at November 23. We’re supposed to bring urine samples, ultrasound scans of fontanelle, the results of ophthalmology tests and the every single other test result we ad got. There’s over two weeks left until the consultation, such a long time… so I grabbed the phone and called some cytomegalovirus specialists in private clinics to ask about earlier visit. I’ve managed to schedule an appointment on November 8! He’s a pediatrician and cytomegalovirus expert!
November 8 2012
Today I went with my mom and Helenka to see mentioned pediatrician at private clinic in Ursynow. It turned out that’s the woman from Children’s Memorial Health Institute I spoke to on the phone the day before! She carefully examined Helenka and recommended the same tests as before, on the phone. She said the hearing loss might have very often gone hand in hand with other diseases but at the moment she couldn’t see any alarming signs suggesting something else might have been wrong. We’ve heard a little bit about cytomegalovirus infection and it didn’t sound very promising. Hearing loss could not have been cured and the virus might cause some other health problems so we hoped it wasn’t it.
November 12 2012
Today Helenka visited ophthalmologist at the private clinic. The examination was terrifying, even though the doctor was very good at her work I hadn’t expected anything like this. She opened Helenka’s eye with some spreading device and examined it with some tool. It looked terrifying, but thankfully it didn’t last very long. We’ve got positive test results, as of that day everything seemed to be all right.
November 13 2012
Today we’ve met the doctor from the Cord Blood Bank. We’ve been waiting impatiently for this day, because we’ve still had hope for curing our daughter. We didn’t give up and we would do anything in our power to help her. The doctor said there’s a chance to administer Helenka embryonic stem cells in Warsaw, but the Bioethics Commission must approve that. He also mentioned safety and a few cases of administering his patients embryonic stem cells, although it’s never been done in Poland in order to regenerate hearing loss. We’ve also had a discussion about causes of the hearing loss and concluded that Helenka could not get a blood transfusion because we weren’t able to rule out possibility of genetic disorder, in which case the blood wouldn’t help. We’re considering Agata’s (older sister) blood, or the blood from an unrelated donor. The doctor also suggested applying mesenchymal stem cells, which means they are younger, from Wharton’s jelly if I understood it correctly. Apparently the nerve cells originate from those cells in human organism. We’ve decided we have time until July. Since time is running out and those cells might not help, we would probably have to choose cochlear implant ? and that also was doctor’s advice. He also told us to not tell everybody about the planned therapy. His argument was that some people were envious and would be capable of harming us with their prejudice. There were four of us in this meeting, Dominik, my Mom, Helenka and me. After we left the doctor’s office we were very positive and hopeful. We still had the chance to cure Helenka!
November 20 2012
Today we’ve visited the orthopedist. The test results were normal, he ordered us to lay our daughter on her belly as often as possible. When I mentioned that Helenka’s deaf he asked a very strange question if she’s was not blind as well. Helenka was very well-behaved, the examination took only a moment and we need to see the doctor soon for another ultrasound test, just in case.
November 23 2012
Another visit today. This time at the Infant Pathology Clinic in the Child’s Health Institute in order to find out if Helenka was ill with cytomegalovirus. As of today the blood test has shown us that she’s got antibodies against cytomegalovirus but she’s not sick. Now we’re able to take a closer look at it. We were made very welcome, the doctor examined Helenka, took a blood sample and performed ultrasound scan of fontanelle. Everything looked normal. The detailed blood and urine test results will be available in a few days from now and then we should know the details about cytomegalovirus.
November 26 2012
Check-up visit today. Helenka’s had a heart echogram, if I understood correctly it was because of my gestational diabetes, fortunately everything was fine. Sadly, the woman who did the test was quite unpleasant.
November 29 2012
I called the doctor from cord blood center. He’s still gathering material for bioethics committee. He would also check the dates of submission of the applications. Every time I was having had conversation with him, I felt a big surge of optimism.
December 12 2012
Today the scheduled appointment in private Medicus clinic took place, we were there to see dr Geremek. I was there with my mom and Helenka had the Auditory Brainsteam Response test done again, sadly the results were still identical ? no answer even with 100 dB. Dr Geremek said that there may be a slight response at 90 dB in one of the ears, I believe she meant left ear. I’ve asked about rehabilitation and she gave me phone number to Kajetany’s Rehabilitation Ward. It was very nice of her that she face gave us her email and told us we can contact her there if we have any unanswered questions. I’ve asked her if she knows something about treating hearing loss with embryonic stem cells. She answered she’s familiar with it, but it’s not being done in Poland. She also said that Helenka qualifies for cochlear implant and that should have been the best solution for her.
December 14 2012
We’ve managed to schedule Helenka’s rehabilitation for December 28 2012. I was searching the Internet for the information about foundations that help parents of the deaf kids with their problems. The ones in Warsaw are: ?Usłyszeć Świat?, ?Polski Związek Głuchych?, ?Dźwięki marzeń?, ?Fundacja Echo?. Unfortunately we’ve been living in Ustanów for several months now and Warsaw is 30 kilometers away. All foundations are located in the city centre or even further away, not a single of them is in Ursynów or Mokotów ? if they were, that would help me with rehabilitation visits. I’ve managed to schedule the meeting in ?Fundacja Echo? at January 10 2013. I’ve also made an appointment to see the a psychologist to help me accept the situation. I think I need several visits.
December 21 2012
Unfortunately the visit at Kajetany has been cancelled, because our personal guide called in sick. I am supposed to keep inquiring about the next appointment.
January 10 2013
Today at noon I’ve visited Echo Foundation at Ochota and met the owner. Mrs Aleksandra is a well well-groomed, good-looking woman who had the same experience, but a few years earlier. She told us about her teenage son who’s deaf, unfortunately the implants weren’t available back then, so she had to spend lot of time to rehabilitate him with hearing aids. Back then she didn’t know where to go for help, so she decided to help people like here that by creating the Foundation. She praised cochlear implants and their effects. Told us about her son’s relations with other kids, about his problems but also about his achievements. On that day there was no empty spot for Helenka in the queue to see the speech therapist, but I was told to wait for a call in case anything changed. So I am waiting. February 4 2013 Today I’ve had the first scheduled visit to Kajetany’s speech therapist. She was punctual and at exactly 10 am she invited me to her office. Hela was asleep so we’ve had enough time to talk. The doctor recommended the implants and stated that we’re in the perfect position to choose them, because Helenka has profound hearing loss. Parents of children with 60dB hearing loss must take a more difficult decision whether to choose implants or hearing aids. But hearing aids would allow our daughter to hear loud sounds at best, but she wouldn’t learn to talk because she wouldn’t hear speech sounds.
During the meeting I was instructed how to play with Helenka, how to talk to her (In exactly the same way as with a hearing child), sing to her a lot, play and spend lot of time on her development. The doctor recommended that I buy Jackie Silberg’s book ?Gry i zabawy z niemowlakami?, because with hearing turned out, the remaining senses of a deaf child may go crazy, so it’s very important to stimulate them in every aspect ? and activities described in that book would be very helpful for Helenka’s growth. The therapist said it’s necessary for the kid to wear hearing aid all the time, even during naps and only take them off for all-night sleep and baths. Even small sounds may stimulate the cerebral cortex and won’t keep human auditory system from working. We would meet once per week, because even a small stimulation like this would help with faster development of the child after the placement of a cochlear implant. She also told us about possibility of inserting second cochlear implant and that we have to decide before our child reaches the age of three. I replied that we still hope that in a few years it should be possible to cure hearing loss with stem cells and we would leave one ear for that kind of treatment. But the doctor said that stem cells don’t work on every child and in the next several decades it may not be possible to use this method and implied I should start thinking about two implants. I was delighted that I would be under permanent supervision of Kajetany’s speech therapist. I would visit her once a week for one hour.
February 6 2013
Today we’d visited cord blood bank and met a doctor working there. We’d received initial version of our application to Bioethics Committee. Together with Dominik, we’ve had asked many questions about safety of application of stem cells. We’ve had many doubts recently: what if we accidentally harm Hela? Does it make sense to try? Maybe it would make things worse, she doesn’t have any other health problems… stem cells are often administered to terminally ill people often, but then there’s no other cure, so it may only help. But we we’re in a more difficult situation… our decision was harder because Hela’s healthy and might live normally ? so why take the risk? There was still time to make that final decision, but it’d be difficult. What if we decided to give her the cells and it would endanger her life? That could plunge us into even more despair. We’ve had to think rationally ? hope dies last and that’s the most important guide. We still believed we’d help our daughter without any side effects. The doctor assured us that the child’s safety is their primary concern. On the other hand he said it’s our own decision and nobody was forcing us to make it. It was obvious he believed in stem cells and their ?miraculous? effects, but unfortunately he’ wasn’t ensuring us 100% safety. Pity. I would really like to meet a person I could trust who would assure us Helenka is safe and will regain her hearing thanks to stem cells ? I wished those dreams came true. We were still looking for a doctor who would accept her to his ward and administer the stem cells intravenously. We would also prefer to gather the whole documentation before 19 March because we would be able to submit an application to Bioethics Committee then. Time is running out, we hope everything will be all right.
February 11 2013
Today at 2 pm I took Helenka to Kajetany for scheduled visit to speech therapist. The visit took an hour, during which we talked a lot but the doctor focused our attention mostly on the child. Together we were trying to figure out what kind of instruments she was able to hear. The test was very reliable because I was hiding behind the wall and playing an instrument while the therapist was watching Helenka. Only güiro made her motionless a few times. I’ve asked what are the disadvantages of the implants and I was told that during a storm it’s better to remove it, when the air is humid the ear may sweat. Also, sometimes the magnetic part of an implant may jump to some metal. I found out that the centre organizes rehabilitation camps for kids and various group meetings, which is undoubtedly a nice idea. The doctor mentioned that during puberty kids with implants have a strong need of contact with their peers who also wear the same cochlear implant, but it passes with time. They let me borrow a book ?Letters about raising a child with hearing impairment. The guide for parents of pre-school age children?. The meeting was very nice and took one and a half hour. Hela was also happy and smiling even though during the activities she gets tired of easily.
February 12 2013
We found out today that someone wants to rent one of our flats. It’s pure coincidence that people who sign the papers have a 4-year old daughter with a cochlear implant! And they used to live in the same town we live now! Amazing coincidence. They signed the lease agreement for two years, thus we would have regular contact with them. It feels good to meet people in the same situation, that assures us we’re not alone and we may have normal life after all.
February 13 2013
We were still looking for a doctor who would provide our daughter with a bed at his ward, so Hela would receive her stem cells. The ear specialist gave us contact details of a doctor from Audiological Ward who would be interested in such cooperation if Bioethics Committee allowed the transplantation. It turned out this doctor lives in the same housing estate we do! Considering we’re neighbors, we’ve arranged a meeting with him and the cord blood doctor on the next day.
February 14 2013
This morning we’ve visited Dr Radziszewska to check the hearing aids she borrowed Hela, but it turned out they produce loud beeping sounds ? so I’ve decided to stop using them and chose old Phonak’s. Dr Radziszewska tweaked the settings a bit. This day I’ve also visited the clairvoyant who said that implanting the cells into my daughter won’t do any harm, but won’t help either. He told me he was seeing something metallic and Helenka would hear, but not naturally ? is there any way to check this? The woman from Echo foundation called me and said there’s a free place so they can perform rehabilitation free of charge. We have to call them back and arrange the first meeting. At 6 PM we’ve had that meeting with two doctors, the one which was scheduled the day before. It lasted over one hour. Both doctors were talking about safety of the cells and we felt they agree about safety of this method. The head of audiology ward proposed that Helenka would be under his care during the entire therapy. He would examine her and check the progress of potential regeneration. In the next week we should attend all very detailed tests under his supervision. I would call on Monday and set the schedule. He told us the story about his doctor friend who had given birth to a deaf child seven years ago and for a long time had pursued the possibility of regenerating hearing with stem cells, but eventually the kid ended up with two implants. Maybe it was too early back then, because the development of research on hearing loss have rapidly progressed for the last 2-4 years? The doctor encouraged us to meet this woman and ask about her experience with stem cells. Me and Dominik wanted to do this and hear her opinion on this matter.
February 20 2013
Today we’ve visited Children’s Health Institute for ASSR (Auditory Steady State Response) test. It’s similar to ABR (Auditory Brainstem Response) but it has larger scale up into 120 decibels. It turned out Hela’s left ear is responding at 115 decibels at three frequencies, unfortunately there isn’t any response in the right ear.
February 21 2013
We’ve received a call with information on Helenka’s cord blood transplantation. One hospital agreed to sign an application to the Bioethics Commitee. Dominik visited the Foundation where he opened an account for Helenka, which would allow us to transfer one percent of our income tax and then use that money on batteries, rehabilitation and all other costs of the treatment.
February 22 2013
Today at 2 PM a worker of the Institute for the Deaf in Warsaw came to visit Helenka. She’ll come for two hours every Friday, I only needed to take her back to the train station after the visit, but it wasn’t any problem for me. I was glad there was a chance of performing therapy at my house. Very convenient that way. Mrs Ania was a nice and warm person, she mentioned her grandparents who are also deaf ? that means she had contact with such people all her life, she grew around them so she knew sign language and might have been able to teach me a lot. It was all very important to me, because in the future Hela would probably be very interested in such information and in choosing similar life. Two hours passed very quickly, we’ve been talking a lot until Helenka fell asleep and I took Mrs Ania to the train station.
February 26 2013
Another rehabilitation visit. We went to see Mrs Basia at Kajetany. She praised implants all the time and recommended surgery as soon as possible, because with such deep hearing loss we need to do it early, the surgery is being performed even on 6-months old children. Mrs Basia took professional approach to the rehabilitation and seems to be a competent person. I understood her arguments and if it wasn’t for the hope I put in stem cells I would agree to the immediate surgery. Sometimes I wonder if stem cells weren’t blocking us and if I should have been so into them in the first place ? all that therapy was delaying my decisions. I want Hela to grow properly, to start hearing, but what if stem cells won’t work? There wasn’t isn’t any guarantee… I have more and more doubts about it. I was recommended to visit a psychologist, but unfortunately there wasn’t any openings left that day. The conversation with psychologist was very unpleasant, I would never call her professional… waste of breath. Also I’ve wanted to contact the geneticist, but he was already gone and nobody was able to give me his office phone number and there was no response at the main facility number. I left without any helpful information, also the receptionist was very rude.
February 27 2013
I’ve cancelled the CT scan (computer tomography) because Hela had a runny nose and I prefer her to be in full health for the test. I didn’t schedule another visit because it was uncertain when anesthesiologist would be available. I keep thinking about administering the stem cells ? maybe it would be better to perform implant surgery as soon as possible? Actually I feel like accepting the fact that my daughter will have an implant and it doesn’t strike me as that much of a tragedy as at the beginning. Hela seems to develop perfectly, sometimes even faster than hearing children, but soon she will stay behind because of hearing impairment.
March 11 2013
We’ve met Mrs Basia from Echo Foundation. She has three daughters, one of them is about Helenka’s age. I asked her if she saw some big differences between my child’s development and hers and she told me she felt like it was her own daughter, it was the same look and behavior. The only difference was that her child started babbling and forming first syllables already, unfortunately Hela’s still silent… it’s a pity. Mrs Basia stated that the faster the implant surgery would happen, the better ? my kid would start babbling, but only after she would have heard some noises. Basia praised implants and comforted me saying we should be happy this was happening now, not twenty years ago. Right now implants are a really good solution. The whole meeting was very pleasant. Basia seemed to be a very nice person, devoted to her work. She had shown me many activities: – Hela in the blanket and we swung her and walked around saying ?tap tap tap, hop hop hop? – We sang songs – We’ve shown her some animals: cat, dog, cow, always saying ?meow?, ?woof?, ?moo?. Reportedly all kids first recognize animals by their sounds and then learn their names. She also said we needed to talk to the child, because the children quickly develop lip-reading ability. Even if they don’t hear, they see our facial expressions, lips and understand a lot of it. We would meet once per week. She ordered logorytmics with other kids, starting in September.