Dear Lactnetters,
       I am posting the following situation with permission from the mother.
We are hoping in your collective wisdom you will have something to share which
would help her and her baby. This is her third breastfed child and she is
very committed to breastfeeding. The older siblings are 5 years and 20 months.
       The baby girl is currently 4 months old. Approximately 1 month ago she
was diagnosed with laryngomalacia, swallowing disorder with aspiration,
pastulous esophagus(spelling ?) and failure to thrive. She is anemic, presumable
from the low weight gain and lots of blood tests which were drawn at this point.
The baby also has lupus anticoagulants which is some type of clotting
disorder. Baby's lungs are "filled with junk" and it is suspected she has already had
pneumonia and partial lung collapse. I admittedly have little or no knowledge
of the conditions unusual conditions but I have helped mothers with failure
to thrive in the past.
       The history is as follows. Breastfeeding began normally at birth but
as weeks went on the baby began to show respiratory symptoms. Mothers describes
rapid breathing, retracting, fatigue, feeding difficulties and choking
beginning around 2 1/2 months. They were diagnosed and treated at their local
hospital for reflux and worked with a good lactation consultant there who taught
them all the right things for reflux. The symptoms persisted and worsened so they
were referred to a children's hospital for consultation. Mother says the baby
underwent many tests for her heart, brain, upper GI, pH probe and what mother
called cookie swallow tests. She didn't know the exact names of these. The
cookie swallow test was an x-ray while swallowing 3 different consistencies of
liquids. The thinnest liquid, most like breastmilk, produced the most leakage
into the voicebox. The medium thick also leaked into the voicebox but to a
lesser degree and a substance similar to breastmilk mixed with rice cereal was
swallowed satisfactorily. They were sent home with instructions for mother to
pump all her milk and feed it mixed with cereal. Mom was permitted to offer the
empty breast for comfort after pumping. The comfort sucking produced choking
and gagging within seconds and was discontinued. The doctor explained to mother
that the condition is worsened by the baby being in a relaxed state when she
is at the breast. The thickened feeds did not work either and they were back at
Children's.
       Currently, the baby is fed expressed breast milk continuously by
nasogastric tube and is scheduled today for surgery to place a gastric tube for all
feedings which will be left in place for an undetermined amount of time. The
MD has advised that the baby will outgrow this condition in time and will then
have to relearn to eat. She will then have speech therapy to treat the
disorders. Mother does give baby a pacifier and other things she can put in her
mouth for texture and stimulus hopefully to prevent complete oral aversion until
the problem is resolved.
       As for mother, she is naturally exhausted. She was given a
Pump-In-Style by her insurance company which she uses for all pumping. She preferred it
because she is often away from home with doctor visits and homeschool
activities she does. Her nipples and breasts are sore and her original phone call to me
was about using frozen breastmilk in the ng tube overnight so she could sleep
longer. Milk supply is sufficient at this time.
       I discussed the following things with her regarding the lactation part
of the issue.
1. A classic pump would better maintain milk supply over time. Finances are a
problem so I suggested she talk to the rental stations near her about a grant
pump. She has a WIC rental of the Lactina temporarily, but thinks their
income will be over next evaluation and she will have to return it. She also feels
she gets more milk from the Pump-in-Style. She said it is so hard to keep up
pumping because she has other responsibilities. I have emailed the link to her
for the Whisperwear pump. She was excited about the idea of being able to go
about her normal activities while pumping.
Does anyone have experience with this pump? Would it be sufficient to
maintain a milk supply for an extended time with no baby going to the breast? Is the
Symphony as effective at maintaining milk supply? Maybe it would increase
mothers comfort at breast. I don't sell or rent Medela pumps so I can't help her
and I live an hours drive away.
2. Previously frozen breast milk should be used within 4 hours. This goes
back to the post just recently about how long breastmilk can be safely used. I
never did see a reference posted regarding that. Does anyone have guidelines for
this way of using breastmilk. I suggested  using her fresh milk immediately
since we know it is good at room temperature up to 10 hours.
3. She wanted to cut back her pumping frequency, but I advised her to stick
with her current schedule of every 3 hours during the day and every 4 hours at
night since she is just making enough milk for baby now.
4. I also suggested maybe chiropractic or CST for baby's conditions.
5. I did a brief search of Medline and found many articles about
laryngomalacia. I skimmed through the first few pages of abstracts and found a few
indicating surgeries which were effective in treating this condition without
complications. I mentioned the possibility of surgery to the mother. She was told the
surgery was not best by her current doctors.
       My questions for anyone with experience with this condition is whether
there is any way to continue to breastfeed at this point? Wouldn't the act of
feeding at the breast facilitate and quicken the correct development and
growth of these structures? I wondered if Dr. Brian Palmer would have any input
into this? Also, the mother has heard of Dr. Newman from another Mom at the
children's hospital and wondered if you have any input into this situation (are
you there)? She would be willing to travel to see you.
       Thanks in advance for your replies.
Judy Gutowski, BA, LLL, IBCLC
Breastfeeding Matters - Western, Pa where it's clear and cold this morning.


             ***********************************************

To temporarily stop your subscription: set lactnet nomail
To start it again: set lactnet mail (or digest)
To unsubscribe: unsubscribe lactnet
All commands go to [log in to unmask]

The LACTNET mailing list is powered by L-Soft's renowned
LISTSERV(R) list management software together with L-Soft's LSMTP(TM)
mailer for lightning fast mail delivery. For more information, go to:
http://www.lsoft.com/LISTSERV-powered.html