Guest guest Posted January 27, 2001 Report Share Posted January 27, 2001 Hodge wrote: The testing was done when my son was about 6 weeks old and still in hospital with the meningitis. It was done by Neurology, rather than Audiology and the technician did the test, then said to me: " Have you noticed that your baby can't hear? " Later, a med student That was it for information. le was also identified at birth, while in the NICU (33 week preemie) . When she failed the newborn hearing test, I demanded they do and ABR while she was still in the NICU, she was test at 21days old. Her test was also done by Neurology and not Audiology and at the time I didn't know anything about hearing loss to know any better, nor did I know anyone that had a hearing impaired child. . I also was unaware that they had results were there right away, didn't know any better. The hospital referred us to Children's Hospital of Philadelphia, upon discharge I asked if the results were in from the ABR daily was told no, Upon discharge I requested a complete copy of her Hospital NICU stay so, I could take all the information with me to Chop the following day, (they did make the appointment for us so we could get right in there with no wait ) we were also dealing with alot of different issues. I picked the records up the day after she was discharged and of course went through them to read what was in the records to find out my daughter was diagnosed a profound loss failed at decibels up to 103 and they knew and never told us instead they referred us to CHOP. I was furious, confused overwhelmed etc. I couldn't believe they knew all along and never told us especially when I asked constantly. I have hear a lot of horror stories about how parents are told their children have a hearing loss and I hope as the mandating and testing becomes more popular, they have people to educate and give parents direction as to where to turn to look for help. I do however feel fortunate that all high risk babies were tested or it would of take me a while to realize there was a problem . It turned out that she wasn't profound she was moderate to severe. Oh, they also said they did another neurological test that showed an abnormal response. We were also told the same thing and it turned out that nothing was wrong neurology. On a more positive note, the PT who worked with him was sure when she first saw him at 6 months, that he would never walk,but had the sense not to tell me that, and was thrilled to be proven wrong. We were told that there was a chance that le would not walk either, she was a late walker but now she is running. I too was thrilled they were proven wrong. I just thought I could share my story with you also. Take Care Colleen Mom to 6 (hearing) le 2 (hoh) > > Re: New Member-- > > Sure you can use that! I should also mention that while we were informed of > possible hearing loss, it also was mentioned in an offhand way: he may not > be > able to hear music. Can you believe this? Of course we were not concerned > because the doctors weren't. If I had known that over 40% of all childhood > deafness is caused by meningitis ... > You know, after the ABR, if I wouldn't have called pediatrician to verify > that I was reading 'no results at 90 dB' I bet he would have filed his copy > of the report and that would be the end of it. I belong to another circle > for kids with CI's who were deafened by meningitis and I was not the first > person there either to share this experience. > > > Mom to 4 yrs old, N24 8/98 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2001 Report Share Posted January 28, 2001 We too found out about 's loss due to mandated hearing screen for premature infants. In NY though, they did not do it in the NICU but after discharge when he was around 4 months of age. I wonder why they wait? Anyway he is 4 yrs. old now and doing quite well with his aids. He had his right ear deteriorate recently so now his loss is considered severe Tammy Norman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 Thank you for your reply, Colleen. After seven years (maybe because we are coming close to my son's birthday and the anniversary of his illness), I still need to talk about our experience! Re: New Member-- > > Sure you can use that! I should also mention that while we were informed of > possible hearing loss, it also was mentioned in an offhand way: he may not > be > able to hear music. Can you believe this? Of course we were not concerned > because the doctors weren't. If I had known that over 40% of all childhood > deafness is caused by meningitis ... > You know, after the ABR, if I wouldn't have called pediatrician to verify > that I was reading 'no results at 90 dB' I bet he would have filed his copy > of the report and that would be the end of it. I belong to another circle > for kids with CI's who were deafened by meningitis and I was not the first > person there either to share this experience. > > > Mom to 4 yrs old, N24 8/98 > > Quote Link to comment Share on other sites More sharing options...
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