Dear Jennifer:

May I recommend the book "Shelter from the storm: Caring for a child with a life-threatening condition" by Joanne Hilden, MD and Daniel Tobin, MD with Karen Lindsey? It does not focus on breastfeeding. However, it is written for parents of a child who may (or may not) die. It is written in a very compassionate manner. It talks in detail about things few of us want to imagine, yet some of us must think clearly about and act decisively upon. I believe the information and support the book contains can make a genuine difference in the quality of a child's living (and dying) and in the quality of parents' living (and grieving). 

I don't know if any of these will be helpful, but I'll mention them just in case:

Good Mojab, C. Helping breastfeeding mothers grieve. Ammawell 2002: http://home.comcast.net/~ammawell/helping_mothers_grieve.html

Good Mojab, C. Congenital disorders: Implications for breastfeeding. Leaven Dec-Jan 2000, 35(6): 123-128: http://www.lalecheleague.org/llleaderweb/LV/LVDec99Jan00p123.html

Good Mojab, C. Congenital disorders in the nursling. Unit 5. Lactation Consultant Series II. Schaumburg, IL: La Leche League International, 2002.

May the mother, baby, and family be well supported in this difficult time. I'm glad they have you in their corner.

Cynthia

Cynthia Good Mojab, MS, IBCLC, RLC
Ammawell
Website: http://home.comcast.net/~ammawell
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