I am so behind on Lactnet, but I have to share a story with you.
I had a mom sitting off to the side in my breastfeeding class on
Thursday, and I went over to help her because her baby was really
agitated. the baby was only a few hours old and the way she cried
worried me. Mom looked familiar and it turns out that she is a
repeater.....now that I am working more than two years, I am getting
moms who are back for another round. She told me that she was here
1yr4mos ago and sat day after day in my bf room with a baby with severe
suck problems.....tongue thrusting, no latch, etc, but in the end we got
her to latch and she went on to bf for more than a year. When I asked
about the older child, i sensed a reluctance to speak about her and the
only info I got was that she had been very sick. I left it and
concentrated on the new baby who finally latched well and calmed down.
Later after my lecture I went and sat with this mom again and started to
speak to her a little. It turned out that the suck problems we
experienced early on were perhaps the first sign of SMA (sensory motor
atrophy) and at about 4 mos the child was diagnosed with Werdning
Hoffman Disease a genetic disease affecting the sensory motor which
explains the sucking problems. They went from hospital to hospital with
the baby and the one point that was raised in every clinic......how
could it be that this baby at age 6 months, 10 months, etc has NEVER
been sick? These babies usually are hospitalized often with upper
respiratory illnesses, recurrent ear infections, etc and this baby was
never sick once in all the first year. Of course the mom accredited
this to her milk and its protective properties, a fact which most of the
docs seemed to ignore. The child died a month ago and the one thing
that really gave this mom so much comfort is that her insistence to
breastfeed her may not have saved her life, but it saved her unnecessary
suffering and definitely improved the quality of the short life that
was, not to mention the psychological aspects.
I am asking myself if I should have noticed something wrong beyond the
normal suck dysfunctions I see so often, but now with so many epidural
and vacuum births, sucking dysfunction has become the norm and a baby
who latches and sucks well is the exception of the rule.
Have any of you had any experience with babies with SMA?
Esther Grunis, IBCLC
Lis Maternity Hospital
Tel Aviv, Israel
mailto:[log in to unmask]
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