I work in a WIC program, as a nutritionist and IBCLC-to-be (hopefully, taking
exam July 30)
I have been working closely recently with a client who has a baby with a
severe cleft palate/lip. I have the mother's permission to post. The baby
is currently about two weeks old, and gets most of her nutrition with pumped
breastmilk delivered with a Haberman feeder. I estimate that the gap in the
baby's palate is about 2 1/2 to 3 inches wide. The cleft also has affected
one of the baby's Eustachian tubes and she will have some reconstruction
surgery for that as well.
There have been a few occasions, where formula has been used, when Mom
couldn't pump enough. We (Mom, myself and peer counselor) are working with
her to increase her milk supply, by more frequent pumping, relaxation and
breast massage. Mom is very committed to providing only breastmilk, as the
baby is spitty when given formula, and mom has been well informed about the
benefits of keeping the baby on breastmilk. The baby has shown good weight
gain, and is already several ounces over birth weight and stooling frequently.
Surprisingly, although this baby has the most severe cleft I've ever seen,
she actually can achieve a latch. Its unclear how much milk that the baby
actually transfers with the latch. Mom is comfortable, no soreness, and says
she can "feel her sucking". However Mom reports that the baby doesn't
swallow much at breast. The baby will nurse at breast for a few minutes,
than come off the breast and fuss and not relatch, then Mom feeds her
expressed breastmilk. I havent been able to observe a feed myself. On mom's
first visit to our office, she was excessively engorged from milk coming in,
and plugged ducts and baby couldn't latch. (we worked through that
successfully). When I saw her again this week, the baby wasn't interested in
nursing while she was there, although we did attempt a latch.
One of the measures I have suggested to help Mom increase amount pumped is to
pump on one side while the baby nurses on the other, figuring that will help
elicit a nice letdown, and any milk that leaks into the baby's mouth she will
benefit from. I also feel that since Mom enjoys nursing the baby, that this
is an important bonding consideration for them, even if milk transfer isn't
adequate. I have two main concerns..... We've talked about using a SNS setup
for her, but am unsure about the specifics of the little tube delivering milk
into the mouth, as far as accidentally leaking into the sinus cavity.
Certainly breastmilk in the sinuses, is a less important consideration than
formula, I don't even think I would want to try it with formula.
Also from my observation, I have noted Mom has pretty fibrous aureolas and
although its a nice *target* for the baby to latch on, I wonder if she is
effectively compressing the milk sinuses. (thus little milk
transfer)..although with not seeing a feeding I can't accurately assess. If
this is the case, I wonder if there is a point to using a SNS? If we can't
expect the baby to effectively transfer milk, is there an advantage to this?
Additionally, I wonder if anyone here ever used an SNS with a cleft palate
baby and what your experiences were with it? I certainly wouldn't want to
even try it without pediatrician support/approval.
The second concern is that the baby will be going to the specialist at the
end of the month to be fitted with a special plate. At first I thought the
Mom was talking about an obturator, but I realized after discussion with her
that this wasn't the case. Mom doesn't know the name of the device, but
states that it is being used to help close the very wide cleft this baby has
in the palate before the surgery and that she will have to wear it for 4-6
weeks. Mom states that she was told there will be "a little metal thing
sticking from her mouth that they will use to tighten up the palate". To me,
it sounded kind of what they do in the orthodontist office with braces. The
question Mom had was whether it would be possible to latch this baby while
she wore this device, or whether the little metal thing would make that
impossible, and she plans to ask when they go for the fitting. Has anyone
heard of this device with cleft palate babies, and is it in fact, likely to
impact that baby latching on?
Another really interesting thing about this case, is the mother. During the
pregnancy, she was lukewarm about breastfeeding, thought she would do it
awhile but combine it with formula. Now I'm seeing a Mom convinced her baby
must have her milk and being determined. She does not have a great support
system, her husband works full time and extended family is not nearby, and
she is from a culture where extended family is important. (Hispanic)
The experience of being a Mom to this special baby has transformed her in
many ways, and I'm seeing Mom empowered in a way that's hard to describe.
Sorry this post got so long.
June Rychlik
WIC Nutritionist, Lawrence Massachusetts
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