Permission to post.

I am working with a baby who has some issues and I want to ask for some fresh perspectives.  He is two days shy of 3 months old.  He was born at 9lbs 12 ounces and weight was down 14% by 1 week.  This is mom's third child and all of her children have had very slow weight gain with breastfeeding.  Her doctor and the WIC office told her that her babies just gain slowly but mom has been concerned since baby was 1 week old.  Baby was hospitalized at 9 weeks at which time he had only just regained his birthweight.  Baby had many blood tests and the only abnormal level was slightly elevated liver enzymes.  Baby left the hospital with a referral to see a breathing specialist at another hospital due to some stridor after feeds.   The hospital nutritionist advised pumping for some feeds and bottle feeding with 1 tsp of powdered neosure for every 3 ounces of milk.  Mom tried this for 3- 6 feeds a day for two weeks and baby began to gain a little faster but became constipated.  Doctor advised prune juice for constipation.

At this point, the mom discussed these issues with LLL contacts and I became aware of her situation.  I let her know that adding formula to breastmilk was risky and that it was more likely that her baby needed more milk, not higher calorie milk.  She had been told by another professional that maybe her milk was on the low end calorie-wise and that might be why he wasn't gaining.  She was worried because she never saw a cream layer on her milk when it sat in the fridge.  I assured her that her milk was just fine.  She showed me a bottle of her expressed milk and it , of course, looked very normal.

I was then able to have a consult with this mom and baby.  Mom has a very narrow dental arch and a significant gap in her two front teeth.  Baby has a very high very narrow palate (the most narrow I've ever seen)  My first finger will not even fit into it.  It looks like a channel in baby's palate.  He also has retrognathia (the hospital also notes these two findings).  He has a posterior frenulum that causes a dip in his tongue when pressed.  His tongue tip and sides rise when he cries but the center stays on the floor of his mouth.  His tongue twists to lateralize.  He has a tight, very thin labial frenulum that attaches at the gum-line.  I was unable to visualize the soft palate or uvula to assess for submucosal cleft because baby was really done having my finger in his mouth and I do not use a tongue depressor (should I?).

I have never seen a baby nurse like he does.  He has very excessive jaw excursions when mom's milk lets down.  Before that he is a little chompy.  Breast tissues slides in and out of his mouth.  When he is actively nursing, he doesn't "click" he make slurpy, smacking sounds with every single suck and frequently loses his latch.  He gets more congested as a feed goes along and swallows a lot of air.  He also has stridor after feeds.  He was able to transfer 2.89 ounces in a 25 minute feed.  A lot of this was during mom's initial let-down.  He transferred an additional 3/4 ounce with a supplemental feeder in 15 minutes.  Mom notes that he sounds the same when she uses a bottle and he usually refuses to take one.  I did not see him with a bottle because he was completely worn out after mom practiced with a home-made lactation aid.  If baby goes longer than 2-3 hours between feeds, mom can pump up to 4 ounces of milk but baby does not want to take it in a bottle. 

I discussed watching for swallowing with mom and suggested that she use breast compressions if swallowing slows and use the supplementer when compressions don't help and pump after every feed.  Baby is now gaining but very slowly, around 1/2 ounce in the last 3 days.  In addition to everything else, baby has significant torticollis.  His head tilts very far to the left.  Mom also makes more milk on the left side than the right.

I have recommended using the supplementer at every feed she can and pumping after every feed she can and using properly prepared formula or donor milk if she cannot express enough to satisfy baby.  I have also suggested a tongue and lip revision and CST for the torticollis. 

She just took her baby for an evaluation for his breathing and the doctor scoped him and said that "his flaps are swollen but it's not too bad"  I am pretty sure this is referring to the possible laryngomalacia?  The doctor said no tongue or lip tie and that those wouldn't affect weight gain.  Baby is scheduled for a swallow study and an upper GI.

I am wondering if anyone notes anything that rings any bells?  Especially the slurping, smacking sound when sucking--every single nutritive suck.  The sounds happen on the suck, not the swallow.  The doctor thinks the sound is coming from his nose?

Laura Spitzfaden, LLLL, IBCLC

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