Others who work in hospitals will speak better to setting up policy and protocols.  But it's great that you're starting the pumping and hand-expressing immediately -- you could cite some studies by Jane Morton that hand-expression does get more volume in those first days.  (And in that first hour, there may be even more available from the oxytocin high of labor.) 

Cleft palates can have so many presentations and levels of severity, but you're right that the milk has to be given actively, as the baby generally can't create suction.  Spooning those precious small amounts of colostrum into the baby's mouth, and syringe-feeding seem like reasonable short term methods.  

Can the need for supplementation for cleft-affected babies be the same guidelines of weight loss/diaper output/blood sugar/bili-counts/etc. that apply to all babies?  If temporary supplements are medically needed, and the family's goal is exclusive breastfeeding/breastmilk-feeding, can small amounts of donor milk be patched for *all* babies while the mother works on increasing her own volume.  (As long as we're talking policy, let's ask for the stars….)

And the policy could include counseling guidelines for the long-term picture.  And helping parents in these difficult circumstances feel some common ground.  For good or ill, lots of breastfeeding babies get supplements in the hospital.  And many babies get better at their work at the breast as they get bigger and stronger.  Catherine Watson Genna's book "Supporting Sucking Skills" discusses various methods for supplementing at the breast.  A feeding tube on a 30mm syringe, taped on side of the breast where the lower jaw is (so the breast is occluding the cleft), lets the mother give little taps of milk.  Even under ordinary circumstances, supplementing at the breast with a tube is fiddly, so mothers need to know that she and the baby need to practice. 

Many breastfed babies end up having to learn about the bottle and breast together (which is challenging -- we expect so much out of these cave-babies!)
Dr. Brown's has added a new specialty feeder for cleft-affected babies. https://www.drbrownsbaby.com/medical/products/specialty-feeding/
 A family I worked with recently really liked this feeder, more than the other systems (perhaps partly because it looked like a "normal" bottle) and the baby, who had a severe cleft, managed the flow well.

Breastmilk is a physiologic fluid less likely to cause irritation or infection if it goes in the wrong direction.  (And babies with clefts are prone to ear infections).  And any baby that's going to be in medical settings and undergoing operations needs that normal immune support.  (And there's lots of debate on when the optimal time for repairs is.)

And you're right that the cleft palate organization needs to hear that a cleft-affected baby gains so much from doing something at the breast -- the touch and interaction helps a mother connect with baby who is not the baby she envisioned; it can be a tool to soothe a baby in medical settings and waiting rooms; breastfeeding is great oral exercise for encouraging normal tongue movement; breastfeeding is aerobic exercise for the baby's whole body; a baby's mouth on the breast fine-tunes the immune factors to any illness the baby is fighting; a snuggly baby creates the right hormonal milieu to help the mother's pumping efforts, etc.

Good luck in your work.  It must be hard working with families in those first days when they don't know how their story will unfold.

Margaret Wills, IBCLC Maryland, USA




> Date:    Mon, 29 May 2017 19:32:37 +0000
> From:    "Shamblin, Tricia" <[log in to unmask]>
> Subject: cleft palate protocol and colostrum feedings
> 
> I was wondering if anyone out there has had success with creating a policy within their hospital when it comes exclusive breast milk feeding of babies born with a cleft palate. Our issue is not so much the cleft lip, of course, which is easier to deal with. But when there is a cleft palate, we are being told that they want the baby bottle-fed by 12 hours old and if there is not enough colostrum to go into the specialty bottle, then we need to supplement with formula (so they can get used to the bottle). The MD's are concerned that the parents need to practice using it before discharge. Also, I'm being told that the baby needs to gain weight before they can have surgery. However, the first surgery is not typically until they are 2 months old. I'm just wondering if anyone else has encountered this? How do you feed colostrum to a cleft palate baby? We typically have trouble putting 1 ml of colostrum into a bottle and don't usually see increased volumes for 48 to 72 hours even though we get started pumping and hand expressing right away.
> 
> We have had success by taking a 1 ml syringe, sitting baby upright, getting them suckling on a gloved finger, and then inserting it in the side of the finger. Or we have also spoon fed them sitting upright. Any other suggestions would be helpful.
> 
> I think we need to organize and talk to the Cleft Palate Foundation as well about some of their booklet they have created for parents. There "Getting Started" page lists only formula feeding and makes no mention of breast milk at all. And they are very negative about breastfeeding and essentially say, don't even bother. Just bottle-feed breast milk. It was very disappointing to read.
> 
> Thank you,
> 
> Tricia Shamblin, RN, IBCLC
> 

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