Re: << My question is what advice do you have for a mom expecting twins one
of
whom has a cleft defect? She nursed her first baby for two years and is
quite distressed to learn that one of her new babies may have difficulty
nursing at all. She said the doctor told her that the ultrasound indicates
some cleft involving the palate, but, of course, the full extent of the
anatomical involvement won't be known until birth. The mom is a personal
friend of mine who asked me to research for her. She anticipates the need
to pump. >>


Susan, I'm currently NOMAIL re: Lactnet but checked the archives and found
your post. In the past I had a MOT who had one twin with a cleft in our LLL
Multiples group. It was a while ago, and the twins were preterm,
undiscovered til birth and definitely no prior knowledge of the cleft. So
initially this MOT pumped for both, and eventually the twin without the
cleft fully BF and the other was fully human-milk-fed for 6-7 months prior
to solids being started. Mom continued to pump for him for many months
longer. (Pumps also werer not as good then!) Cleft babies are more
susceptible to URIs, so this baby is especially lucky that mom will provide
her milk for him.)

As per posters on Lactnet, I think she is lucky to have advance knowledge
so she can "grieve" and readjust a bit before their birth. If it was me,
I'd be in contact with the VA pedi surgeon for info and possible referral
if they are too far away. The idea to get a feeding specialist is also
good. In our city there is a "feeding team" at the children's hospital and
other cities also have them. However, a neonatal OT should be able to help.

Since lip repair is often done early, whether or not cleft repair is done
early, this mom is likely to have issues with one infant in hospital for
days and one not. There is a chapter in Mothering Multiples dealing with
this topic. Also, this expectant MOT may really benefit from the support of
other BF/AP-type MOT/MOM, such as those on the yahoo group APMultiples.
Several have dealt with pumping for one, rehospitalization of one, etc. To
get there, she should go to: //groups.yahoo.com/. Once there she'll have to
subscribe (free) with a user name and password. Then go to "find a group"
type place on the page. She should type in APMultiples -- all one word --
and subscribe. It may take a few days to get on, as moderators check new
members.

Hope this helps.

Karen Gromada

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