INFANT FEEDING
Chapter 2 - Parent's Guide

     The challenge will take many forms over the lifetime of the child.  For now, during the first seven months or so, the child is unable to compare itself to any other children.  As far as the child is concerned there is nothing wrong.  He or she entered the world with Moebius Syndrome and to date all things are status quo.  The challenge is being addressed solely by the parents and other family members.

     If you are the kind of person, as a parent, that pushes the limits rather than simply accepting something like Moebius Syndrome as a life sentence, you probably have been experimenting by now.  You may have been told to expect certain developments or lack thereof with regard to your child and the effects of Moebius.  Perhaps you were told the child would not be able to take milk from a bottle.  My guess is that you tried it anyway at some point.  I know of at least one mother that tried it.  The oft mentioned Habermann Feeder is probably the first experiment with bottle feeding.

'I have been very aggressive with her feedings. At birth she was so week she couldn't even chomp a drop out of the bottle and it appeared as if she almost didn't even desire to.'

'When Sam was about three and a half months we decided to try using the Haberman feeder again. I started by giving her 10cc with the bottle and the rest through the tube. I would pinch her cheeks with my index and ring finger and support her chin with my middle finger to help her create a seal. She seemed to have no problems whatsoever. I continued giving her 10cc's for about a month with encouragement from her pediatrician. Her lungs sounded great and she showed no signs of distress. I upped the amount I put in the bottle to about 30cc and Samantha was fine. She looked forward to her bottle, so forward that I would have to start the tube feeding before the bottle so that she felt somewhat full or she would get upset to say the least. I continued this until her six month swallow study.'

'She never showed any signs of aspiration. No choking, coughing, no blue or redness in her face, absolutely no signs of distress only a eagerness towards the bottle. So when we went to CMH for her study I walked in confidently with a box of rice cereal and a bottle full of formula. They put her in front of the Xray machine, mixed some barium into her bottle and we watched it go down. You could see it going into her stomach and into her lungs. Although it was only a few drops she was at a high risk for pneumonia. We had to quit the bottle and strictly feed her through the tube. I was only to dip her pacifier in the formula so that she could have a taste.'

That the child will never smile (without surgery) becomes another chance to beat the odds.  Nearly everyone in the family spends hours and hours testing.  Trying to get the baby to smile or at least perform some movement that can be construed as a "smile".  But it doesn't happen.  You will learn to see the child's own unique and beautiful smile.

Eventually, the family learns the noises and actions that indicate happiness in the baby.  After all, at this point the child is still unaware that any problem whatsoever exists.  So as with most children, this baby will be happy and sad with corresponding noises and actions to indicate feelings at any given moment.  The responsibility of  the parents is to recognize the baby's method of communication and encourage.

By the time many babies are six months old they are usually beginning to sit up by themselves.  Some may be rolling over and some may even be scratching at the blanket in an effort to reach the toy that's just a little too far away.  Moebius babies generally come along somewhat later.  There is a common lack of upper body muscle tone that accompanies Moebius.

'Her muscle tone is also week and I was told by PT that she is at a 3 month level and she is now 5 months.  I work with her as much as I can.'

'Her OT suggested we buy her an exer-saucer to sit her in and put padding around her to help hold her  up and it has helped her strengthen her neck.'

'My daughter [name] has Moebius and is 10 months old.....She is rolling all over and is sitting up. She has started to rock when she is on her belly. We are working on building up her strength in her upper body so that she can start crawling.'

Unless you live in a bubble, far from the civilized world, you will eventually run into someone with a baby near your child's age.  Perhaps another member of your family has a child the approximate age of your child.  Humanly speaking, it is impossible to avoid a momentary comparison.  That's what all parent's do.  That's what we all do our whole lives.  We compare.  We compare our cars to the neighbor's car, we compare our homes, yards, jobs, spouses and we compare our children to other children.  We just like to know how we're doing or how we stack up.

The first time you have to explain (which you are under no responsibility to do) why your child can't roll over at six or seven months, the knock you hear will be reality.  As you accept this reality you will probably begin to look forward a few months and understand that before long you will carrying a child that by comparison should be walking by then.  The baby will roll over, crawl, walk and run.

A special child will need effort beyond the extra effort that all children need.  Parents are human and none of us know it all.  Love fills in the many blanks.  Something else that fills in the blanks, since we were all raised by imperfect parents, is professional counseling.   There is no embarrassment in admitting imperfection and seeking the answers necessary to be successful.  The embarrassment exists in stubborn avoidance under the existence of obvious floundering and ineffectiveness.  I am a proponent of quality and effective psychological counseling.  I say  the words quality and effective because as with any profession or trade, there are accomplished practitioners and those less accomplished.  Find a counselor that makes you comfortable.   

Children deserve a parent's best efforts.  Some times that may involve some learning on the part of the parent.  Seek a 'teacher' at those times.  The challenges will continue, will your progress as an effective parent and individual continue as well ?

'I know there will be tough days ahead but I know we will get through them.'

There will also be many good days ahead.........Samantha said 'mama' the other day.  And that was a very good day!  Just ask her mama.

Something we will address in a later chapter is the apparent lack of counseling specific to Moebius.  May even have a 'guest speaker' or two.

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