Sharing with permission:

A mother contacted me about custody, pumping, and breastfeeding/solids intake issues for her now-15-month-old daughter, who doesn't care for solids, so breastfeeding is still her primary source of nutrition.

This mother has Superior Mesenteric Artery Syndrome (SMA) syndrome, which makes gaining weight extremely difficult; weight loss is dangerous for her. When she tried pumping, she never achieved let-down, and she lost too much weight, so her doctor banned pumping. However, with the custody issues combined with her daughter's resistance to solids, she's getting desperate. She's very concerned about how to get her daughter the best nutrition as well as how to not lose her milk supply.

Her doctor said he can justify the calorie burning from breastfeeding but not from pumping. She currently weighs 107 pounds; since her daughter's birth, she got as low as 103. While she is not currently having significant symptoms, she needs to not lose weight or burn unnecessary calories.

The judge has ordered overnight visits for the toddler for up to 24 hours at a time. The mother has tried to request that not happen; she is very concerned about the impact on her supply of going over 5 - 5.5 hours for separations. I (and others) suggested that it seems likely that pumping INSTEAD of breastfeeding will not burn any more calories than breastfeeding (though that may be incorrect?) and, hence, might make pumping acceptable to her doctor and solve some of the custody challenges. However, with her inability to achieve a let-down when pumping, we're not sure that will help. (We have suggested hand expression as an alternative, and I sent her information for doing that.) Is there any research or information on this kind of situation?

I offered the mother a variety of info re breastfeeding, legal info, ways to make pumping more successful, and introduction of solids as well as referrals to IBCLCs and contacted our Professional Liaison Leader, who reiterated some of what I had shared and added a few new things. She has already tried all the standard ideas I offered.

She has taken her daughter to a specialist to assess the feeding issues; there is thought the daughter has texture aversions, and the daughter will be in therapy to try to resolve those.

I referred her to an IBCLC, but that person referred her elsewhere because she has no knowledge of SMAS. The mother is frustrated because there are few medical personnel with extensive knowledge about both SMAS AND breastfeeding, so she is getting very little support for continuing to breastfeed. She does not want to wean.

 Does anyone have any other information I can share with this mother? Please do let me know if you have additional questions.
 
Sandy Moore-Furneaux
La Leche League Leader
La Leche League of Cleveland County Families
Norman, OK

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