Hannah Marie Scheib
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Hannah is a 29-week preemie twin. She was born with a vascular disorder called Golden Har Syndrome. She was intabated when she was born (as was her sister) but basically just hung on to the O2 in the hospital. She had many many feeding problems up until very recently. She came home from the NICU on O2, NGtube for feeding, and an apnea monitor. When she was about 3 months old she went into the hospital for pyloric stenosis and the hospital staff could not re-stabilize her breathing. A trach was put in after much testing and studying and several "coding" incidents in the pediatric intensive care. She is working with her passie mure valve for speaking, but we are not having much luck with it.
We are planning on starting the several years worth of re-constructive surgeries for her jaw this summer, and when that is complete we hope the architecture of her mandible will allow for a planned decannulation!!!!
We are presently having some problem with her twin sister Maegan who constantly wants her sister's trach. She has been on a rampage to decannulate her. After about the 6 or 7 decannulation we are getting very tired of it. Hannah does not seem to mind, but we are afraid on time we will not catch it in time. If you or any other trach parent has any suggestions we would love to hear them!!!!!
Update September 2001 - Hannah is now 3 and looks quite a bit different. She has had several successful surgeries and is doing great. We did get the unhappy news that she is not likely to get decannulated any time soon. She has come through the rib graft to build a mandible----- the mandible distraction----------the new mandible overgrowing and having to be trimmed, and it looks like it is happening again. This is not what we had hoped for Hannah, but she is still a very bright, happy child with an opinion on everything. She had grown very comfortable with the trach, it is close to all she has known. Her twin (Maegan) is a great help. She is head translator for Hannah to adults that don't take the time to try to understand her, and can put the plug in Hannah to hear her talk.
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Hannah Age 3
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Maegan and Hannah Schieb
- We can be reached at scheib@prodigy.net
- Cathy Scheib
