Hi All,
I am supporting a mother with an 11wo baby (3wo adjusted age) with
congenital CMV and prematurity. The baby is profoundly deaf, possibly
cerebal palsied, severely epileptic and an MRI scan showed extensive
calcifications of her brain (indicating possible neurological
impairment). Blood tests reveal the baby is still suffering active CMV
(which is a condition that causes flu-like symptoms). However, against
all odds, the mother has managed to get the baby to the breast, and has
been exclusively breastfeeding (with cup fed supplements of EBM) for
some 8 weeks now.
Due to the baby's epilepsy, the local paediatrician has had her on
phenylbarbitone, but she was just totally zonked out on it. He switched
last week to phenytoin (sp?) but it doesn't seem much better. The baby
has been vomiting a lot, on every feed, but no one knows if the baby is
unwell, it's reflux or a side-effect of the medication.
The baby's weightgain has fallen off (she's only about 8.5lbs, 3.5lbs at
birth) so they want the mother to supplement her milk with a fortifier
(which seems to be a mixture of coconut oil and glucose). However, the
mother isn't happy about this because she can't see how it is going to
help if the baby is vomiting. She has been giving the baby a multi-
vitamin and iron supplements. The baby hates the iron, and screams and
fights when she gives it to her.
A couple of days ago, the baby refused to nurse and is now being tube
fed with the mother pumping. The pressure is now on for her to
bottlefeed the baby, and to supplement with formula. The endless
comments are being made about "we can't tell how much she is getting"
and the mother is being badgered at every appointment to come up with an
intake figure.
(incidently, this is the mother I have written about before, who's first
child nearly died from severe formula allergies until she was able to
partially relactate)
The one thing this mother wants more than anything (except her child's
health, ofcourse) is to be able to breastfeed this baby again. It was
the only thing that seemed to be going right, and everyone has been
amazed that her baby was able to nurse with such serious challenges.
I know the situation is complex, and I probably haven't given enough
details (I am not a medic or trained LC), but I am turning to you all to
see if anyone has any ideas about this situation, or maybe know someone
who's "been there, done that" and for whom it worked out.
I ought to add that we live in Britain and the doctors are technically
pro-breastfeeding but largely ignorant, particularly in such a complex
situation. The mother is endlessly told that her baby "shouldn't" be
able to breastfeed and that bottles would be so much better, but I
suspect they'd just be a lot more comfortable with a situation they are
familiar with.
Thank you for any insight into this situation.
--
Anna H.
mailto: [log in to unmask]
http://www.ratbag.demon.co.uk/anna/
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