I have permission to post.  I am crossposting from another group because I am hoping to get some feedback from providers who have worked with babies recovering from ASD/VSD for some perspective on expected growth during recovery.

I have been working as an LC with a mom whose baby has a very thick lip-tie and a tongue-tie that doesn't affect extension but causes baby to retract tongue while crying. It also stays on the floor of baby's mouth when baby cries. This baby was born, weighing in at the 33rd percentile and fell off the charts by 2 months, gaining less than 3 oz/week. When mom took baby in for a 2 month check-up, baby was rushed to a heart specialist. Baby had heart surgery for ASD/VSD at 11.5 weeks and then began gaining at a rate of 7 ounces a week.

I first saw baby at 4 months for a consult because the heart surgeon expected baby to put on weight a lot more quickly than average, after surgery. These babies tend to make up their weight gain quickly. With some positioning work and breast compressions, baby began gaining about and ounce and a half a day for the next 10 days. 

In the last couple weeks, baby had been shortening feeds from 20 minutes to 10 minutes and sleeping more at night and mom was concerned about transfer and weight gain. I suggested she encourage night feeds again and I came to her home for a test weigh and baby transferred 4 ounces in 10 minutes.  Baby did click and cough a little at the breast but mom said this was not usual.  Mom had encouraged baby to wait for this feed to coincinde with my visit, so mom may have been a little full. Mom does *not* have problems with plugged ducts or uneven breast drainage or nipple compression during feeds. Mom's supply continues to be robust. Baby gets 4-3 oz bottles at daycare and mom easily pumps more than baby needs. Baby feeds at least 5 or 6 times a day at the breast in addition to the bottles.  At 5 months, baby is still trending upward, gaining slightly faster than the average 5 month old and is almost back on the charts.  From the weight taken at the visit, baby has been gaining 4.77 ounces a week (on the high side of average for a 4.5-5 month old) for the last 3.5 weeks.

Should baby still be putting on weight faster than this to make up for the early slow weight gain?  Baby is pretty round and the doctor is happy with growth. 

I have given mom all a lot of information about the possible effects of untreated lip and tongue-ties but because breastfeeding is going very well, she is unsure how to proceed. We have access to an excellent laser dentist who could do the revisions if she goes that route.

Is this gain appropriate?  Should baby be gaining faster?  Does it sound like the baby's frenulums are interfering at all with weight gain?  My biggest concern is messing with a breastfeeding relationship that works for a baby who is still working at getting back onto the appropriate growth curve, but tt and lt can affect so many other aspects of baby's health and the sooner the better if they want to revise.

One thing that scares me is that I would like to believe that if I had seen this baby before the heart repair surgery, that I would have recognized that more was going on than just TT and LT, but it was even missed by the HCP at a 1 month check up! It serves to remind me that I have to look at the whole picture.

I have presented to the mom that the VSD/ASD, TT and LT are all midline defects and all of these, including the mild anal stenosis baby had in the first week are associated with MTHFR. I would also be interested in information about what that might mean for baby.

Laura Spitzfaden, LLLL, IBCLC

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