Problem-Solving with Catherine

Question: 
We have a set of 27 week twins who have a 3-year old sibling who was a 24 weeker in our nursery. The 3-year old had a g-button placed before discharge from the NICU (poor feeding, often did not awaken for feedings or show any feeding cues before discharge). She eventually had a fundoplication at 6 months because of persistent emesis/gagging. At 3 years of age she will drink some liquids but does not eat. She gags as soon as her g-button feedings are started and will gag when she sees someone else eating. 2 weeks at a local feeding clinic (a year ago) resulted in this child screaming for 2 weeks and the parents stopped the program and have not sought any other help. The current twin siblings (infertility treatment with medication–first sibling had a twin that did not survive) are also having significant feeding aversion. Mom did not breastfeed the 3-year old, but was consistently in the NICU to feed/care for the infant and provide consistent feeding experiences. The current twins were recreationally breastfed for several weeks before any bottles were given. The female twin is much like her sibling, in that she often will not awaken for feedings at 40 weeks corrected age (she does still have a sm/mod PDA and is consistently tachypneic. The male twin has had persistent gagging and vomiting for weeks. He has more of a desire to eat but takes a long time to “warm up” to the idea with out gagging. Offering a shorter (preemie) nipple seemed to minimize the gagging, especially with the male, and though he takes partial feeds, he frequently vomits during or after the feeding whether nippled over 30 minutes or gavaged over 2 hours. Multiple formulas have been tried (including 7 days of Enfamil AR and 7 days of Neocate, plain MBM,etc) but the vomiting/gagging persists. These parents are sooooo sad that the twins are behaving much like the previous child, but they see a future with 3 children who do not eat. This family lives in a very small town and have little access to feeding therapy. Any suggestions? The male twin had a tongue tie which was clipped several weeks ago. The female twin also has a tongue tie that we have asked ENT to visit, as her mother’s nipples became very painful last week when more breastfeeding attempts occurred. Mom says the babies also gag at the breast. Thanks for any suggestion.

Answer: How very sad. These former 27 weekers now 40 weeks +PMA sound indeed like aversions are present, perhaps due to WOB and struggle to PO feed, as it sounds like, knowing your developmentally-supportive NICU environment, the staff have been thoughtful about supporting them. His gagging at the breast and her not waking for PO (likely not so much only respiratory fatigue as a form of purposeful disengagement due to learned stress) are signals that we need to back off on PO. I would suggest: Hold PO. (1) offer gentle tastes of MBM on mommy’s finger, (2) offer own hands to face, own hands to mouth, and (3) only nuzzle at breast with no expectation on mommy’s part that infant will latch or transfer milk (4) gentle oral cares, no swiping but instead use deep pressure input. I suggest a PEG for both of them, not that I am giving up on their ability to PO feed but rather to promote neuroprotection. Their experience of PO feeding, even with good developmental care, is right now being perceived by them as adverse and is creating stress that can wire their brains away from eating and is doing just that. Given their co-morbidities and parental stress in trying to get them PO feeding, the infants’ stress will only get worse in the short term if they continue to be expected to PO feed. It would be helpful for mom and dad to see the POPSICLE video (“Parent Organized Partnership Supporting Infants and Children Learning to Eat”). It can be found on You Tube under Popsicle Feeding Video. It is the creation of parents of former preterms who were forced to feed and had long-term feeding aversions. The families also have a website called http://www.FeedingMatters.com Their parents need to offer guarded optimism for the feeding futures of the twins. Because sister still has feeding aversions at age 3 does not mean the twins will; however if we continue down the path they are on, it will increase that risk. Every feeding experience matters, and that must be the rationale to support a different plan for the babies in the short-term. I hope this is helpful.

Catherine