Lu writes asking for experiences with Goldenhar.  I have a 10 year old
nephew with Goldenhar Syndrome.  He was not breastfed, but I have always
wondered how difficult it would have been; as well as how potentially
helpful it may have been to the development of his facial muscle
development, speech development, and general health.

He has had more than 5 surgeries, several of which were quite extensive and
painful, from about age 4 onward to develop the left side of his jaw.
However, he is a real trooper and has adjusted well to the questions he
gets from others about his missing ear.  The surgeries have resulted in a
much more balanced looking jaw and face.  Prosthetic ear placement will be
attempted in a few more years.

He has had other chronic health conditions, including extensive allergies
as a toddler.  I am not certain whether these are related to the syndrome,
or unique to him.

If these parents would like to be connected to others who have "been
there," please contact me privately.  I'm sure his family would be happy to
share their experience.


Cindy Turner-Maffei, MA, IBCLC
Massachusetts, USA

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