We just added our fourth child on June 4, 2001, Corey Jene Knight. He weighted 7 lbs., 6 oz, 19" long, diagnosed after MRI that day of semi-lobar hpe and microcephaly.

We found out at 16 weeks from a routine scan that his forebrain was not divided as it should be and the technician had me call my husband to the doctor's office where we were told that the baby had an incompatible to life problem with his brain and asked if we were interested in abortion or we would have to carry to term knowing the baby would die. The regular obgyn then sent us across the street to a periontologist for a second scan to concur with their diagnosis. When we got across the street to him, he couldn't find anything wrong as near as he could tell. We conjecture now that may have been because I have lots of scarring from previous c-sections. At any rate, we went another 2 months thinking nothing was wrong with baby.

At 25 weeks, I went in for a follow-up scan with the periontologist and he then decided there was abnormal division, etc., in the forebrain, but that he thought the facial features looked okay. He then did an amnio and in two weeks everything came back normal on it. I then went to the regular obgyn and he proceeded to tell me that they thought something was wrong with the other doctor's diagnosis all along and that baby only had one nostril, one kidney, cleft lip, and many other distortions, as well as being terminal and would not be expected to live more than a day or so after birth. At this point, we wanted another opinion of someone in another city that possibly had seen this before. We were then referred on to Kansas City, Mo., where they scanned and found that babies facial features were normal and other things were also okay except for the malformation in the brain.

The pregnancy went ahead without a hitch and Corey was born on June 4, 2001. He came out crying and wetting all over the doctor. He seemed extremely healthy and apgar scores were excellent. He continued to thrive with no problems with breathing, feeding, etc. He has never acted sick yet. They did, knowing upfront, some of the endocrine problems that could exist, test him for sodium levels, etc. It does turn out that he has diabetes insipidus and also is low on cortizone. He is currently on ddavp which is working good so far and cortizone supplements. He has wonderful muscle tone, good stepping reflex, good grasp reflex, startle reflex, and definitely, good latching reflex to nurse. He isn't a terribly spitty baby either which makes it nice when giving him medicine.

Does anyone have any experience with a baby that starts out this way? Do these babies usually lose their muscle tone if it is good to start out with? It is encouraging to see him be able to do these things. He also has passed his hearing and eye test (as far as you can an eye test at this age). He obviously sees and hears though because the tracks with his eyes and turns his head when hearing sound. He also can hold his head up for a few seconds at a time. I will try to update as I gain more info.

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August 6, 2001

Well, Corey is 9 weeks today. Been awhile since I left info. so I decided to add a little today. Corey is still doing very well!!! No seizure activity yet, still great muscle tone and reflexes. He now holds his head for longer periods of time and can kind of inch worm when you put him on his stomach. He smiles responsively now. It is just too cute!!!! He tries to grasp at times and sometimes with success. My 12 year old daughter is minus lots of hair (ouch!!!). He is beginning to get lots more interactive with people now. When he nurses (yes, he is still nursing. No supplements yet of any kind), he now looks at me and every once in awhile will smile at me. He tries to mimic facial expression by opening his mouth. Not much comes out sound wise. Sometimes he will make an "ah" sound when he opens his mouth. But, no other vowel variations yet anyway. Early intervention has been out about 2 or 3 weeks ago and said he was doing great. At this point, they are just monitoring him to see when we need to start working on something delay wise. He is still doing good with his diabetes insipidus and cortisone deficiency. Meds have done the trick so far. His head is still really small. It measured 12" at two weeks when the home health nurse came and now it measures 13 1/2" at 9 weeks. The homehealth nurse told us that the head circumference and chest circumference are usually the same and his chest circumference went from 13 1/2" to 15 1/4". If anyone would like to chat with me, please feel free to do so at kknight@cpol.net. We are going for the ususal shots next week. It will be his first time. I hope we don't have any trouble crop up because of it. I'll add more later. Thanks!