Unfortunately, I've had quite a bit of experience with cleft-affected babies
(CAB). Someone mentioned seeing one CAB in 4 years, I've seen over 24 in 8
years. We live in a highly polluted area, and along with CAB, we have
autism, Down's Syndrome, and a rate of cancer which is 300x higher than the
US rates.

What seeing so many CAB tells me is, the number of women who choose to
breastfeed a baby with a birth defect is probably pretty low. It takes a lot
of work, and these are not always first babies, so there are other family
members to consider. So, there must be quite a few more CAB who are not
breastfed.

All of "our babies" are sent (for evaluation and repair) to Children's
Hospital in Columbus, where the doctors are amazed at the health of the
babies. The mouths and skin of the breastfed CAB are pliable and ready for
repair much earlier than the mouths of the babies who are not breastfed.

Now, breastfed is a different definition for all of these mothers. We have
not had much luck with good milk transfer at the breast. All of the mothers
I have worked with have chosen to pump and give milk by bottle (Haberman) or
by supplementer. They have chosen this route because they can see exactly
what is going in, which makes them feel confident that their baby is doing
alright. 

There have been different experiences with bonding. I worked with a mother
of twins who nursed one baby, pumped for her other child and someone else
fed the baby with a bottle. This mother admits that she has little bonding
with her child. The other mothers have experienced a lot of bonding,
probably because they are affiliated with LLL which really encourages
mother-baby togetherness, as well as our group of friends who hold each
other's babies and encourage each other to meet their babies needs.

Good luck with your studies!

Sam Doak

<<

I am a Nursing Student at Ivy Tech.  My research on breastfeeding babies
with cleft palate tells me that this method of feeding is not usually
sucessful and insufficient in providing the nutrients that babies need.
There is always the option of pumping the breast milk however then you miss
out on the bonding associated with breastfeeding. What are the ways around
this barrier and what tips would you give these mothers that are determined
to breastfeed?

Thank you for your time,

                 Jamie Grimaldi

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