Lactnetters,
I am posting to keep people up to date on the situation regards the
mother with a baby with congenital CMV, epilepsy and neurological
problems.

An excellent paediatric dietitian is now involved in the case and has
raised Cane to get this baby fed (seems the doctors forgot rule no.1
"Feed the baby"). The mother ran out of NG tubes at the weekend, and due
to a communication problem (the doctors didn't realise how poor the
baby's oral feeding was now), the baby received nothing to eat or drink
for two days. The dietitian wants a gastrostomy tube set up so that this
situation can never happen again, and to avoid the suffering of the baby
having tubes shoved down her throat on a regular basis (which she
believes is a cause of the baby's oral defensiveness). The mother is
relieved, although not looking forwards to the surgery.

The baby has not put on one ounce since breastfeeding ceased several
weeks ago (except the little the mother has been able to pump). They
have tried numerous kinds of formula, but she cannot digest it (this is
a repeat performance of the situation with her first child, who was also
FTT until she relactated). Finally, an HCP has agreed with us that this
baby needs breastmilk. She will try to get donor milk, but told us she
didn't want to promise anything. I gather you have to jump through hoops
of fire, backwards, to get hold of donor milk in UK. The mother has 6
friends standing by who will donate, but without the necessary blood
testing (the baby's immuno-compromised) and pasteurisation equipment,
it's been impossible for us lay-people to organise. The dietitian is
aware of these potential donors and seemed to think there were
possibilities there too. I got the feeling she will not let this
situation continue to slide.

She has ordered a Haberman feeder for my friend, from America,
apparently, to help with developing the baby's oral abilities. I don't
know much about how this works, but it sounds an interesting idea.

Incidently, the mother is *still* pumping, only yields are minute.
--
Anna H. Breastfeeding advocate and writer.
http://www.ratbag.demon.co.uk/anna/

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