Dr. Jen,

I may be coming in a bit late on the discussion and you've gotten some good 
responses already. But I do have some thoughts.

It is not unusual at all for babies who are this severely affected 
neurologically, as you know, to be behind in their growth parameters. It is 
a huge challenge to get these kids fed and to help them move along 
developmentally. Besides the immunological protection of ebm, which is 
extremely impt for this baby, the brain and nervous system benefits would be 
paramount in my opinion. I would encourage this mom to continue breastmilk 
feedings til baby is at least 2 yo if she can. Surely she is very 
discouraged by the dev. ped. advice. Not infrequently, I have heard similar 
cold-hearted comments by hcp's so it doesn't surprise me.

You said that "In the last 2 weeks, he has suddenly started to have more 
intake by mouth.
He is now taking breastmilk by bottle, about a total of 600-700 ml per day 
(21-25 oz) and also some pureed foods, mostly vegetables to which mom adds 
some additional coconut oil and infant cereal made with breastmilk"  This is 
an awesome developmental milestone! This mom has worked heroically with this 
baby and she is making great progress! I would suggest looking for calorie 
dense and/or nutritious foods that baby can tolerate like avocado, sweet 
potato, even meats, more pureed table foods.  Baby may even take some on a 
spoon. You said she is pumping a bit more than baby's intake, maybe she can 
skim the hindmilk, altho I would hesitate to put more workload onto this 
mom.

One other suggestion is for you and she to look for internet forums or 
support groups where she can talk with other moms with neuro-impaired 
children. Believe me, these mothers will be the experts! They are 24/7 
trying EVERYTHING THEY CAN to give their babies the best possible outcomes. 
I think this will be better for her than listening to the devel. ped. I 
would suggest to her that she find another devel. ped if she can, as she 
will never again have a good feeling nor trust with this doctor, and rightly 
so.

Laurie Wheeler, IBCLC, MN, RN
Tupelo MS, s.e. USA

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