Hello!  Permission to post.

I have a 1st time mom with a 3 week old baby.  Baby has had heart murmur since birth, no color changes.  Using a shield to latch, due to inability to sustain grasp of breast.  Breast tissue very elastic.  When I first saw them at 4 days of age, (actually mom did not mention the murmur until after I'd listened and discovered it based on infant symptoms) baby fed in a mostly upright self latch position, she siphoned the excess milk that flowed easily but did not suckle strongly enough to continue to draw out milk.  She was tachypneic, exhausted and fatigued at the end of the feed.  She occasionally choked on the flow.  Her weight gain has been tremendous as mom has been mostly pumping and bottlefeeding due to ineffective suckling.  Baby has inspiratory and expiratory stridor with feeds and when I auscultated her neck during swallowing her swallows are a squeaky, moist clunk.

On day 11, infant remained easily fatigued at breast, took 0.5ml from mom before becoming too exhausted, and mom proceeded to pump 8oz from each breast!

I recommended continuing primarily pumping and bottle feeding to protect supply/feed baby.  I spoke with pediatrician to recommend an evaluation by a speech and language pathologist, and asked if this baby would be a candidate for a videofluoroscopic swallow study.  Pediatrician said his first step would be to move up the cardiac ecco, which I gather just happened.

Today, at 3 weeks of age, mom called and says that baby has 2 small murmurs that the cardiologist was not overly concerned about, and that baby has Wolff Parkinson White syndrome - about which I know virtually nothing.

My question is - do any of you know if Wolfff Parkinson White syndrome has any correlation with sucking/swallowing disorders?  I think the murmurs are likely contributing to baby's fatigue, but I can't say that they would contribute to the swallow dysfunction.  I'd like to be able to provide a stronger recommendation for speech and language referral to get the baby evaluated.  I'm also looking for anything that might strengthen mom's case for insurance coverage for hospital grade pump rental and continued lactation support.

Any information at all would be greatly appreciated!

Thanks in advance,

Casey Clubb, RN, IBCLC
West Linn, OR

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