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Date: | Fri, 23 Mar 2012 20:31:23 -0400 |
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Glad they are doing a sweat test as the screening tests done with pku is
not 100%. I have a child w/ CF and would definitely continue breastfeeding.
Do NOT let them scare her into weaning. And they might do that since you
can't "measure" breastmilk intake and will say they need to know how much baby
is getting. First thing that will help weight gain is the baby will be put
on digestive enzymes that will help the baby absorb her milk and also may
be put on high dose vitamins (another thing they have a hard time
absorbing). Both of these can be done while still nursing. Reassure her that her
breastmilk is the best thing for her baby to help decrease or less severity of
infections that cf babies are more prone to get. AND it is much more
important for her to nurse than the typical non cf baby and longer than the
first year too.
The thing with giving the enzymes is that it may seem like she should put
baby on schedule so it is easier to give the enzymes but it is ok if she
gives them and then baby doesn't eat as much as she thought. She could also
give the enzymes half way thru a feed or right after a feed and still be ok.
Many moms tend to put the enzymes with apple sauce (spoonful size) (yes,
even before they start solids). Another trick-- I know a mom did is to get
the moms finger wet and then dip the moms finger in the enzymes and the baby
sucks it off. I would also encourage her to nurse, nurse, nurse and keep
nursing at night even as baby gets older. This will keep her supply up for
if she needs to supplement and of course help with weight gain. But I think
the best would be to keep baby at breast (easier for mom) and once enzymes
are used it should help weight gain and mom may not need to supplement as
much. But if supplementing is needed breastmilk should be first choice and
discuss how to bottle feed the breastfed baby.
It is important that you (or another LC) will be able to stay in contact
with this mom because she will need continued help especially if baby gets
sick or hospitalized and to balance growth and supplementing issues.
Sorry if I sound on guard but often times breastfeeding is thrown out the
window on babies who have growth issues and it is so important for them to
have someone who knows how important it is and help them communicate this
to the CF drs/team she will be working with--like a dietian who hopefully
will be on board and educated about breastfeeding in CF babies. But given the
already low breastfeeding numbers in the general population the numbers
will be even lower in CF babies.
Kim Ann Lorber----LLL Leader Quad Cities IA/IL
[log in to unmask] (mailto:[log in to unmask])
_http://cancercaughtme.blogspot.com/_ (http://cancercaughtme.blogspot.com/)
In a message dated 3/23/2012 2:19:57 P.M. Central Daylight Time,
[log in to unmask] writes:
Seeking words of wisdom! Since I work primarily in Public Health and don't
often see babies with major medical issues I need to learn more about this
situation and ways to support this mother (permission to post):
1st child; Baby boy born at 40 weeks, normal L&D at a birth center, no
meds. Birth weight was 7lbs 9ozs. 1st PP visit by midwife, baby's weight
was 7lbs 3ozs; 3rd visit on Day 8 was 7lbs 0ozs which is where I was
contacted. I saw baby on Day 10 with weight at 6lbs 15ozs. and he was not
looking good, loose skin, crying when roused but not really 'awake'. Mom's
nipples were abraded and one had a crack at the base. Parents just
informed that 1st PKU was positive for Cystic Fibrosis and 2nd was drawn.
Mom reports normal breast changes in pregnancy. Mom felt that
breastfeeding was going great--didn't admit to sore nipples until I pointed
out the damage. Midwife reported concern with anxiety in mom (possibly her
maternal radar was firing off!).
Baby went to breast, never opening his eyes, suck/swallow with initial MER
then went to sleep. Repeated on second side when removed from breast and
allowed s2s and self-latch. Output had been on the lower edges of normal.
Oral exam revealed posterior tt and possibly labial tie contributing to
low intake of milk. Baby had a few more swallows with finger support under
the lower jaw. Started pumping with hand pump immediately and fed 1 oz with
artificial teat. Mom got a loaned 'old' Lactina from a friend but it has
not been effective so went back to using an Avent single-hand (very
rural-working on getting a effective double electric pump). Mom breastfed
at least every 2 hours during mom's awake time and at least twice at night
using BN positioning and under the jaw support then supplemented with 1oz
of EBM every feeding for 3 days using paced feeding methods. Weight check
at peds office baby gained 3oz in slightly less than 72 hours and was
stooling much better although mom now saw mucus in the stool. 2nd PKU also
came back positive. Sweat test scheduled for yesterday late afternoon
(Seattle Children's Hospital) and frenotomy scheduled for today (Seattle
BF
Medicine) a five hour drive from their home. I haven't spoken with parents
today.
I found information in the current Guide to BF for Medical Profession.
What else do I need to know to help this mom and baby? How does CF affect
breastfeeding? Will addressing caloric intake and frenotomy be enough to
help this baby be able to bf effectively or will there likely be some
muscle weakness or other physiological challenges? Mom is willing to pump
but wonders how long? Really, really, really wants her baby at breast! I
would love ideas on how to help make her breastfeeding experience the best
it can be. Any information is so appreciated!
Michele Crockett, IBCLC
Snohomish & Okanogan Counties Washington
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