I have taken care of babies with this syndrome, years ago, but don't recall
any particulars. I am not an expert on this, however I did a search for
prune belly syndrome and there are associated anomalies. A feeding problem
is not typically seen, from what I've read. Pulmonary hypoplasia from
oligohydramnios and/or the large abdomen can occur and this seems possible
to be the baby's problem. Was baby also premature and had some respiratory
distress? Was baby on a ventilator early on and now has some chronic lung
changes?
The baby seems to have an oral aversion and I think it could be because
feeding makes it harder for him to breathe. I would explore the option of
placing a gastrostomy tube, if that is possible with this particular defect.
Then baby could gently and at his own pace be introduced to oral behaviors,
and gradual oral feeding. In my experience with chronically ill babies (many
years experience), it can be a great relief for parents to not have to
"battle" to get the baby fed. Often the parents can just accept whatever the
baby can manage to eat by mouth, knowing they can give an intermittent
G-tube feeding, or run a pump during the night.
I know that breastfeeding is possible with a tracheostomy, I think
positioning that keeps the airway open is critical of course, the
assymetrical latch with baby's head extended, not flexed. However, I would
not suggest breastfeeding -- at this time -- until baby is further evaluated
as to his respiratory function. I would suggest skin to skin, which could
occur with baby held chest to chest, but a little above mom's shoulder, or
lying side to side, or just cradling somewhat upright in mom's arms. Protect
the airway is the mantra.
If mother is willing to keep the milk expression going, and I would
encourage her to do so, and to try to increase her supply, then at some
point in the future, they could breastfeed. Also, babies do grow more lung
tissue and can improve over time and have the tracheostomy closed. However,
it is possible that this baby will not breastfeed, I don't know his lung
capacity and neuro status. I certainly believe there is very good potential
for this though.
Laurie Wheeler RN MN IBCLC
MISSISSIPPI USA

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