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overwhelmed...now hearing loss too

Kathy - posted on 05/27/2009 ( 3 moms have responded )

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Hi my 2nd son was born with SB. He had an S2 lesion that was closed approx 24 hours after birth. And 2 days late had a shunt placed. We found out at 21 weeks that he had NTD so I wa prepared for the surgeries. But he failed his hearing test at the hospital and after an ABR today I fould out that he has moderate to severe hearing loss. I was caught completely offguard by this one...anyone else out there experienced this?



Also my son is 1 month tomorrow and I feel like all I have done since he was born is talk with doctors...is it always going to be this way? Right now it seems that we have about 2 appointments a week....is that what everyone else has experienced?

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Karen - posted on 09/23/2009

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Hi, Kathy. Your son is very blessed to have such a caring mom. My son was born with spina bifida 22 years ago this past Aug. 13. His name is Daniel. In answer to your question about doctors and appointments, it really depends on the child. We were also constant companions of doctors during the first three years of Dan's life. Things calmed down after that until the past three years when he has begun to have some more health problems. I even worked full time for a total of about 7 years. The rest of the time I have worked part-time. My husband has a good job. I hope you have a very good support system in place (ie., grandparents, aunts or uncles) to help you. You will need them. My husband and I also have a healthy daughter who is almost 27. Being an older sister, she was able to give me some support during her teenage years that enabled me to work full time by just being there in case anything happened. I am not trying to frighten you. My son's lesion was much higher up than your son's, L-4 or a bit higher. He has never walked. I sincerely hope you have many more good years ahead with your son and that he will be able to walk. That could really make a big difference in the number of medical visits required. These first couple of years may be your most difficult simply because of the learning curve and the need to build your support system, but you are in for a very rewarding parenting experience. I cannot offer any advice about the hearing loss. I don't know if that is something related to the SB or not. You must be very distraught over this new thing. You have my prayers and support. Feel free to use me for a sounding board any time, okay? I mean that.
Your friend,
Karen Shipley

Tara - posted on 07/15/2009

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i had 2 or 3 appointments a week when my son was born, now its every few months which is alot better. Things do get better :)

Jenny - posted on 06/15/2009

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it does seem like a lot of appointments but my daughter is now 6 months and her appt's have spread out a little every 3 months now! I think they should be starting to get spaced out a little more

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