3. THE PATH TO ACCEPTANCE

2013-03-14
3. THE PATH TO ACCEPTANCE

THE PATH TO ACCEPTANCE  

February 14 2013 

On this day we've met with the cord blood doctor. We are starting to get sceptical (skeptical) about that whole idea. During the meeting we decided that the doctor would finish the application through Tuesday, present the application to Bioethics Committee and get the signature of attending physician. I asked the doctor if he would approve the stem cell treatment of his own child if necessary? He was absolutely certain that he would and it's safe, that we had nothing to lose, only to gain, the worst case scenario being no effect at all. That answer made us think more positively about this matter, even though we don't have as much hope for curing Helenka as we had at the beginning. Hela is very often taking her hearing aids off and then puts them into her mouth. I'm afraid she might swallow them... I believe I'm getting used to the fact my child is deaf, even though very often I think: why me? Why us?

 March 14 2013

On this day ? a rehabilitation visit at Echo Foundation with Mrs Basia. It was very pleasant, Basia has a daughter older than mine and said that Hela is physically developing even better than her child ? actually I'm pleased to hear that. I've had a call from Kajetany, they scheduled the date of hospitalization (diagnostics and qualification for implant surgery), we're supposed to arrive on Tuesday at 10:30 AM and we're going to stay there until Thursday, which theoretically gives us three day in hospital. I wonder what will happen there, maybe new tests? I don't feel like going there with Helenka, so far from home with such a small child...

 

 

     

 

 March 22 2013

We've sent an email to the Stanford University ? it's a place when people work very insistently on different ways to regenerate hearing, search for the best method and promise that in ten years hearing loss will be effectively cured. That conversation was very important to us, I think it helped us to decide that we wouldn't allow the injection of stem cells... we were too afraid to take that risk, the implant seemed to be more trustworthy and reasonable. We should see how it turns out in the end.

 

Dear,

First of all we want to thank you and your team for The Stanford Initiative to Cure Hearing Loss. We keep our fingers crossed for you all! Thanks to your efforts we are sure that cure for hearing loss is only matter of time...

Our names are Aleksandra & Dominik Gladysz from Poland. As you probably guess we are parents of deaf baby girl - Helena Gladysz. She was born without any complications during pregnancy and during delivery. Deafness is probably caused by genetic mutation (still under investigation). Problem of hearing loss struck us very badly. We want all the best for our child - we found you SITCHL and it gave us hope. We truly believe that hearing recovery is just matter of time! Only possible treatment in Poland is to graft cochlear implant. We have great otolaryngologists like Prof. Skarzynski and implants are fully paid by the government insurance but it is still far away comparing to normal hearing. Although your research are still in ongoing I have to ask following question: is there any chance to submit for hearing recovery treatment in you clinic??

If it's still to early for treatment I have another question: We are in touch with a Doctor who works in one of Polish banks which store cord blood. He offers possibility to graft mesenchymal stem cells from a not related healthy person. Cells would be retrieved from Wharton's jelly (because of genetic reasons - our cord blood can be "infected" with genetic error). I know that intravenous graft of stem cells is one of the way to treat hearing loss in your research. The Doctor believes that it is not dangerous and it may help. I need to know your opinion? Any hint/tip would be very important for us. We need to be sure that this treatment won't harm our little girl.

I wish you all the best to you, Dr. Heller, Dr. Cheng and all the team!


Dostaliśmy następnego dnia taką odpowiedz:

First of all, I am sorry to hear about your deaf child. I would be very skeptical about the supposed stem cell therapy ? this is potentially dangerous and has no possibility of helping her to hear. My suspicion is that this is a money making scheme. Unfortunately, we have unscrupulous doctors in the US as well putting out false promise of a cure - - for a price.

I know Dr Skarzynski and he is an experienced cochlear implant surgeon. If she is deaf in both ears, it would be appropriate for her to have an implant at an early age.

Below is our standard information on SICHL. Attached is our brochure.

Delighted you are interested in our use of regenerative strategies as part of our Stanford Initiative to Cure Hearing Loss. Please understand that these efforts are currently confined to laboratory animals. It is likely to be a number of years before such therapies are shown to be beneficial in humans ? but we are working extremely hard towards achieving this goal as quickly as possible.
I will ask Kate Morris to add you to the electronic distribution of our newsletter and you can follow our blog posts at our website describing our effort to cure hearing loss (hearinglosscure.stanford.edu<http://hearinglosscure.stanford.edu/>). I have attached our SICHL brochure describing our research goals. If you might be interested in supporting our research, we would warmly welcome contributions to help us achieve our goal of curing deafness.

Best wishes,

 

Potem my napisaliśmy:

Dear,

Thank you very much for your fast reply- it means a lot to us!

Regarding stem cell Doctor: I think he just believes in power of stem cells in general. Such treatment cost less than 6000 USD (no so expensive) and it would be proceeded as a experiment. This means a lot of paper work for him. He is responsible for few more stem cells injections in much more complicated cases comparing to hearing loss. I don't know - maybe it is money making scheme. For us most important is safety and he was sure about it. After you answer we are almost sure that we will cancel stem cells approach. Out of curiosity: can you tell us what are possible side effects of this kind of stem cells injection?

One more question about CI: doctors offers implants for both ears. Not in the same time but they advice to do it as quick as it is possible. They claim that surgery won't damage inner ear more than it is. How to look on such proposal heaving in perspective possible hearing regeneration? We think that it would be better to do only one implant and wait "better times"...

Thank you very much for adding this email to newsletter. We are also follow up all news about your research on FB.

We are looking forward to meeting you someday in Stanford during the treatment for our daughter.

Best wishes

Aleksandra & Dominik Gladysz


Ta rozmowa była bardzo ważna dla nas, myślę że pomogła nam w podjęciu decyzji i chyba nie zdecydujemy się jednak na podanie Helence komórek.... teraz mamy duże obawy i boimy się zaryzykować, chyba jednak implant będzie rozsądniejszy i pewniejszy... zobaczymy jak dalej się to potoczy...

March 26 2013

First day of the hospitalization. We've arrived in Kajetany punctually, at 10:30 AM. We had to wait until 2 PM to get the bed, first doctor's visit was at 15:50. We were very angry that it took so long... also it turned out that our attending physician is the doctor who was checking Hela's hearing in November and we've had a bad experience with her. I presented her all test results ? six ABR, ASSR and many others ? and asked if we had to do them again even though we've done them few times already ? the answer was YES! I asked about scheduling visits and managed to set four of them until Wednesday ? at least that was something. We've received referral to night ABR, then on Wednesday we should visit the guy who's adjusting hearing aids, then speech therapist and the educator. We did all this, the aids are set, visited the speech therapist systematically, ABR done many times, twice at Kajetany... we did them all. I've seen the children after the operation, poor kids, my Hela would probably look like that soon. The only visit that brought anything new was the meeting with the education consultant. We didn't expect anything special, but it turned out the education consultant had a deaf kid, who had the implant for a few years now. She told us about new ways of hearing regeneration, she believed that in the future the solution would be found . She was also watching the progress of Stanford research, just like us. The meeting encouraged us a lot and confirmed lots of our beliefs.

 

 

     

 

 

 April 23 2013

Finally, the results of the genetics tests arrived, but unfortunately they confirmed that Hela's suffering from deep hearing loss. The analysis points that Hela is the a carrier of a genetic defect responsible for hearing loss and now we have to wait for the result confirming this. The geneticist said there's 90% chance for that and now we have to wait for confirmation, probably another few months...

April 26 2013

Helenka's had computer tomography (CT scan) today, everything went well. It took place in Kajetany, we went there together ? Me, Dominik and Hela. One of us was supposed to go in with the child, so I held Hela in my arms and took her to the examination room. Hela was given a mask and received some sleep gas. For a moment she was struggling to take it off, but after a few seconds she fell asleep. I was told to leave. I was quite worried about this situation, it was a new experience for me. We've been waiting for five minutes or so, then they called me in and I saw the nurse carrying awoken Hela. My child started smiling as soon as she saw me. Everything seemed to be very professional, the room was clean and the staff was very nice to us.

May 17 2013

I've got a call today, it turned out Helenka's operation has been scheduled on the next Monday! We had to make all necessary tests very quickly, it was almost a miracle we've made it, because in most clinics they told us to wait until Monday. We've consulted the results with pediatrician and he said that our child may bleed a lot, which made us worry a little. We've also visited the doctor at Kajetany to have consultation before the operation, but we didn't learn anything new, we only waited there for a very long time. We're supposed to be in hospital on Monday at 8 ? the operation is scheduled on the 9th and the child must be on empty stomach.

 

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