To Gloria Thai,
     One of my mothers has a baby with Spinal Muscular Distrophy Type 1, and a friend of my daughter's has a child of school age with SMA type 2, attending school in motorized wheelchair.  It is a sad diagnosis for parents and families and, as you say, your clients are having to come to terms with the new diagnosis.
    The mother with the little boy with SMA type 1 has found a support group on the internet, particularly valuable to her because this condition is relatively rare and there are very few babies with it in Australia.  She tells me that most babies with a diagnosis of type 1 deteriorate and are dead by 9-12 months.  The mothers she knows through the internet whose babies have lived longer than this and maintained good health, have been - wait for it! - exclusively breastfed for longer than customary in the community, and then introduced to fairly limited and carefully selected solids.  Let's shout it - they have had a large and continuing dose of BREASTMILK.
    Last time I heard from this very special Mum, her baby was 15 months and still very plump, though his motor skills have of course deteriorated from the condition.  I have a photograph in front of me at my computer of this very bright-eyes, alert, very loving baby at 9 months.  Photos of him at 15 months show a still-plump, bright little boy.  These wonderful parents are also continuing to provide an optimal, loving environment and stimulation for their beautiful boy, so that his life is happy and secure.
    I would suggest that the medical man who is advocating putting the baby in the US on an artificial milk has probably seen SMA in babies with either exclusive artificial feeding for many months, or breastfeeding with a lot of complementary food, and I imagine the textbooks would be based on a culture of very little breastfeeding.  (Gloria, it is interesting that the other, unaffected siblings of the little boy in the US are also of a light build.)  Very little is known about dietary manipulation for SMA type 1, and is anecdotal, not evidence-based, and shared among parents.  These babies die, but their parents are looking for ways of maintaining health and extending life a little. 
    A few months ago I met a woman with SMA type 4, from whom I also learnt a good deal.  She was 57 and diagnosed at (about) 53.  As SMA is a genetic condition, both her sons were tested.  One was positive.  He is in his 30s and has deteriorated more rapidly than his mother, who is mobile with just a walking stick.  I don't know about SMA type 3, but types 3 and 4 aren't really germane to our discussion.  
     This mother was interested in contact with other mothers, and so, Gloria, if you contact me privately, I am happy to check with this very special mother whether she is willing to be put in touch with your client.  Please contact me privately at: [log in to unmask]
     As for the last part of your post, pumping during pregnancy is a very individual thing, and the mother will need to be under a health professional if she is having noticeable contractions.  From an "is it possible" view, it is possible to increase the breastmilk supply during pregnancy - it certainly isn't impossible as I needed to do this in an emergency situation (family car bogged overnight on an isolated road) and substantially increased my breastmilk supply to full breastfeeding, by feeding at probably about hourly intervals. (I'll give you the references in a separate post.) 
       With best wishes,
                     Virginia
                     in sunny Brisbane
Gloria wrote:
I am helping a mom (an old friend who now lives on the Mainland USA) whose
third child was diagnosed with Spinal Muscular Atrophy at 12 months of age.
The child is now 14 months old and was recently hospitalized as doctors were
worried about weight loss.  I understand this is a problem for these
children.  The child reached 17 lbs max and by 14 months came down to 14
lbs.
 Child also had the flu which didn't help.  Child still breastfeeds, but
will
only take pureed solids.  Child received feeding tube in hospital and has
gained a pound in the past week and will be discharged with a gastro feeding
tube.

Mom has also had to cope with a new diagnosis.  The specialist says that the
baby is considered and overlap of Type I and II of SMA.  .... child will probably only have a lifespan
of 7-10 years.

The doctors are pushing weight gain, which mom understands, however even her
unafflicted children were never 22 lbs at 14 months---which is what the
doctors want.  Doctors want mom to feed kindercal (Mead Johnson) for weight
gain.

Doctors are not discouraging breastfeeding, but not giving it much notice
either as being important  to the child.  Mom was hoping to do more with
breastmilk, i.e expressing for hindmilk to add to feeding tube, etc.

I was wondering about the fortifier that is mixed with breastmilk for
premies.  Would this be a possibility under these circumstances?  Mom also
became pregnant through all this.  She is 12 weeks.  I did not think that it
would be a good idea to be pumping while pregnant.  She's been experiencing
contractions.  What is the concensus for pumping before supply really drops?
Mom plans to continue giving her milk to this child after baby #4 comes
because she knows the importance ....

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