I am hoping that through the collected wisdom of Lactnetters, someone can
help with this situation.   I am currently no mail so please respond to me
at [log in to unmask]

I am working on a potential case study for publication but now simply
wanting to gather information for the family.  How you heard of any babies
with the
following combination of anomalies:
- microcephaly
- polymicrogyra
- white matter formation and distribution problem (CP secondary to this)

I worked with this baby at 10 days of age. Birth weight was 8#4oz at 10
days 6#5oz
- home birth by certified nurse midwife.  Baby had latched on well the
first week with apparent ineffective sucking  but recently wasn't latching
on and was dehydrating.  Basically taught the baby to suck.  At one month
the baby's weight was up to 8#2oz and at 10 weeks up to 12#1oz.  Mother had
to really work with baby at times but baby could and did breastfeed well
and this is true today with baby at six months of age.

Parents are the most compliant I have ever worked with.  Mom an RN in the
midwife's practice and father a respiratory therapist.  This baby is a
surviving twin and microcephaly has been watched via ultrasound since in
utero.  Mother working with herbs, acupuncture and other alternative
therapies.

Two pediatric neurologists have said that this baby should have feeding
problems.  We know that early suck training and breastfeeding and breast
milk have made a big difference.  The doctors are dumbfounded that this
baby is feeding so well.  This isn't so amazing to us but maybe we are too
ignorant of the enormity of the situation.  After two physicians have said
that breastfeeding has saved this baby from feeding interventions and we
don't know what else, the parents have invited me to observe her growth.
We are looking for guideposts here.  Developmentally the baby is currently
delayed about a month.  The second pediatric neurologist is at Mayo (Dr.
Dobyns) and said that this is only the 5th baby known with this type of
migration disorder.

The mother told me that there is a web site for lissensephaly which gives
information on these types of disorders.  The first neurologist wasn't as
inclusive as Dr. Dobyns and was just looking at lissencephaly at the
primary anomaly.

I have suggested to the mother that she forget about the introductions of
solids.  I told her that I have known of many a baby to grow just fine on
breast alone through the first year.  At five months she did try a little
cereal with the baby - it constipated her so she discontinued its use.  I
aked her about the baby's reaction to the spoon and she said it seemed
normal.  I do wonder if a window of opportunity will be lost if  the spoon
isn't introduced at the appropriate time.  The parents are linked into OTs
and other early intervention experts.  I am not second guessing any care
plan they have prepared just gathering as much information as possible
because this case is so rare.

The parents are very interested in hyper barric oxygen therapy as they have
heard it to be greatly successful in CP children.  It is widely used in
Great Britain and they have heard of one MD in the US practicing this
technique.

Any comments or suggestions are greatly appreciated.

Joanne Burke Snyder, MA, IBCLC
Latch-On Services, A Private Practice in Indianola, Iowa USA