I have an appointment tomorrow to see a patient who has been pumping and
bottle feeding after baby was in NICU.  She has been unable to get baby
onto the breast.  As an afterthought, mom sent me an email saying oh by the
way, he has Joubert Syndrome, but I doubt it will effect breastfeeding.
!!!
from the Joubert syndrome society I learned that typical characteristics
are;

Absence or underdevelopment of part of the brain called the cerebellum
vermis which controls balance and coordination.

A malformed brain stem, which may cause an abnormal breathing pattern
called episodic hypernea, in which babies pant, and may be followed by
apnea (cessation of breathing).

Abnormal eye and tongue movements.

Decreased muscle tone. It can be marked in the neonatal period and in
infancy.

Seizures (less typical).

I'm thinking, sure it won't effect breastfeeding! coordination problems
(suck swallow breathe), and abnormal tongue movements? !!!

Does anyone have any experience with a breastfed infant with this disorder?
Please help ASAP if so.
TIA
Denny


Denny Rice, RN, IBCLC
Dallas, TX

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