This is such a tragic condition. There was an article in the paper just last
week about an Edmonton (Alberta, Canada) baby with this condition. The
picture shows her and she's only as big as an infant, despite being 20
months old. The story was about a new drug (pamidronate) being tried (she
had received this treatment at the Montreal Canadian Shriners Hospital) to
see if it would increase bone mass.

I can see that breastfeeding might be a problem since these babies can't be
held (the dad in the article notes that just her own movements or muscle
spasms can fracture her bones; she has the most severe form and still
usually has a broken bone somewhere). Perhaps, though, a mum with fairly
large breasts and some flexibility couldn't manage somehow (I'm thinking of
those women who have figured out how to stay seatbelted and nurse their
child in a car seat--not something I could ever do!).

The article mentions the child is fed baby food because she can't digest
solids, so if digestion problems along with the horrible situation with the
brittle bones are a part of this condition, getting breastmilk into the baby
is extremely important. It could make a really big difference.



Leslie Ayre-Jaschke, BEd, IBCLC
Peace River, Alberta, Canada