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my son

my son

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Posted by Julia on November 02, 1999 at 18:21:54:

My son was born 10 months ago with a very rare bone syndrome. Although the syndrome itself was not initially a concern, he remained hospitalized for 3 months without any indication of why movement stopped in utero and why he was and still is ventilator dependent. It wasn't until about 3 months ago that we found out he had cervical stenosis, or spinal cord compression at the C1, C2 vertebrae. His C2 was malformed, causing the C1 to grow around the malformation thus causing the compression. Since surgery, about 2 months ago, he has made many improvements, but still moves very little, and remains dependent on the vent. ( he is making efforts to breathe, though.) In all of my research, and believe me it's been a great deal, I find nothing about infants with spinal cord injuries, except spina bifida. I'm beginning to believe that doctors have talked other parents into giving up on their baby's just as they tried to do with us. Does anybody know about infants with spinal cord compression? What are the results of surgery, if done, and what is the prognosis for these infants? My son will be healed some how, some way. It would just be nice to know what others in our situation have done.


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