Yes, SMA is spinal muscular dystrophy, and Type 1 is the early onset one,
many of the infants not seeing their first birthday. Thus finding a peer
group of other parents going through the same diagnosis and issues is
difficult, unless one can be found online. So often parents are simply
coping with life and their child's situation in the short time they have.
Some kids with SMA Type 1 do live longer, in some cases attending school in
motorized wheelchairs - but that is rare.

Whether this little baby lives only a short time, or longer, having Mum's
milk is going to provide the best nutrition and may help towards the best
quality of life that is possible in the circumstances. Remember that this
baby is a baby first, and a person with SMA Type 1, second. Cuddles and
skin-to-skin, being talked or sung to, being part of the family, having
family outings - all this helps the baby's quality of life. Remember, this
life is the only life the baby knows. Every infant with this genetic
condition will be different. Helping the mother to see her baby enjoy
particular stimuli while making his life as comfortable as possible, gives
the mother and baby a connection. Feeding looks like being a work in
progress - seeing what works best and how the mother feels she can cope with
it. I can see she has support in this.

Virginia

 

Dr Virginia Thorley, OAM, PhD, IBCLC, FILCA 

Privagte Practice Lactation Consultant

Brisbane, Qld, Australia 

E: [log in to unmask] 

 

Date:    Wed, 8 Feb 2012 18:53:38 -0600

From:    laurie wheeler <[log in to unmask]>

Subject: unusual situation (SMA type 1)

 

I think this is spinal muscular atrophy, a very serious degenerative
disease. I would not focus at all on the palate. I would take the lead from
mother or parents as to what their goals and plans are for this infant. If
mother wishes to directly breastfeed, for example, and there is a safe way
to do some of that (with the tracheostomy), then I would help her in any way
to be able to do that (to whatever extent).

If the goal is to provide mother's milk and comfort care at home, then I
would try to make this as easy for mother as possible. Perhaps a grant for
use of a very good pump would be one way to help her.

Basically take mother's lead, help her or find help, support her.

Best wishes to this family,

Laurie Wheeler RN MN IBCLC

Mississippi USA


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