Hi everyone,

http://www.llli.org/llleaderweb/lv/lvoctnov02p99.html  Good reference for lactation professionals

    Michelle asks about assisting a mother with a baby with possible cystic fibrosis diagnosis. It appears the wt loss and stool issues may not be exclusively related to CF and instead with intake and possible TTs.  Although some babies begin with early digestive issues, pancreatic insufficiency with CFusually takes several weeks to manifest.  Regardless, if this baby does have CF, mom will benefit from your guidance on both counts.
    My firstborn, now 24 and healthy, has CF.  Her FTT issues led me to be a LLL groupie, eventual  LLL leader and IBCLC.  She was finally diagnosed at age 3. SInce that time, babies with CF are often referred my way.  Michele, the above link is a good overview for you.  Here are a few things I would consider:

* Be prepared for HCPs to focus on supplementing and even using hydrolysed formulas or increased calorie formula.  Many mothers are so understandably upset with the diagnosis that breastfeeding becomes a casualty.
* Enzymes are usually started as soon as the diagnosis is confirmed (breastmilk has naturally occuring lipase, but these babies do need enzymes if malabsorbing) and often mothers are told to give with apple sauce. Mothers can count out the enteric coated beads from the capsules and offer off a moistened finger or by spoon with a little breastmilk instead
*  Remind her that breastmilk is medicine and solace for her baby.  Her baby's immune system will be stronger and equipped to fight the dangerous bacterias that causes CF respiratory issues. With the prospect of antibiotics, her baby's gut will be better with breastmilk.  During medical procedures she can comfort at breast.  Babies with CF are better off breastfed or breastmilk fed and there is research to prove it.
*  Protect her supply while the latch issues are sorted out.
*  It sounds like she is going to a designated CF Center (they are affiliated with teaching hospitals here in the US). She will see a group of specialists (pulmonology, GI, social work, dietary, radiology)...have her request an IBCLC from that hospital too at her intake apppointment
*  The life expectancy has doubled since KJ was diagnosed.  There are clinical breakthroughs every year!  

Email me directly if I can be of assistance, Michelle

GO UNC Tarhells, playing the NCCA finals tonight......the University who co-founded the identification of the CF gene in 1989, home of Miriam Labbock, the late Mary Rose Tully, and the first hospital to have a pre and postpartum depression treatment center!   http://www.npr.org/2011/08/14/139559529/postpartum-depression-clinic-the-first-of-its-kind


Jan Ellen Brown BS IBCLC
Charlotte NC USA
 
 

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