Dear Lactnetters,
I am a midwife and lactation consultant in private praxis in Hamburg,
Germany.
I recently worked with a baby boy with a problem I would like to learn more
about. When i saw him for the first time he was almost 2,5 months old and had
not latched on properly after being born 4 weeks early by a cesarian. He also
had to have a surgery at 4 weeks because of pylorus stenosis. He has had
bottles of EBM and ABM since Mom had severely sore nipples from day two as
well as recurrent plugged ducts and an insufficient milk supply. The first
thing i noticed was his almost upright but heavily back-arched position when
he got the bottle. I had never seen a baby taking a bottle this way, but Mom
said this works the best, she thought he just loves to watch her face. So the
first thing I did was to take his cloth off to see the rest. His body was
bent leftwards and his head totally turned to the left and bent backwards as
well, he would not easily turn his head to the other side. Mom stated that he
is often lying in this way. He was alos crying a lot and had a very unhappy
expression on his face. (As a matter of fact i never saw a smile or at least
satisfaction on this babys face.) So I gave her the phone number of a medical
doctor in this area who is kind of specialised on this problem. In Germany
this is called a "KISS-Syndrom" (Kopfgelenk induzierte Symmetriestörung)
meaning: multiple problems e.g. latch and suck problems, crying (colics),
sleeping problems, disturbed speaking and motor development a.s.o.. caused by
a symmetrical disorder of the atlantoaxial joint. (Unfortunately I do not
know the english term for this, is it "archy baby"?)
I also found the mother might have a fungal infection of the nipples and
suggested a test and a possibly Nystatin therapy to her which she did not
want.
A couple of days later the doctor confirmed my suspicion and treated it by
"manual therapy". Afterwards the baby was straighter, openend his mouth and
pulled out his tongue better but would not latch on when i tried to work
with him for quite a while. So i showed them how to fingerfeed. Again I
suspected a fungal infection on the nipples.
Afterwards Mom tried to put him to breast on her own. Unfortunately she was
so pleased with just seeing him on the breast she would let him latch
incorrectly so her nipples got sore and bleeding pretty soon.
A few days later she could not stand to nurse or pump anymore. When i saw
them for the third time the baby seemed more arched again to me as well as
the mother and would not latch at all instead cried most of the time but fell
asleep when i rocked him. Mom had full breasts but would not let down, though
we tried almost everything including oxytocin spray to trigger her MER. She
was near to giving up breastfeeding.
The next day she called to tell me the fungal infection was confirmed and is
now treated by Nystatin but she wanted to wean at least for a few weeks!!!!!
She could not stand any handling of her breast anymore and wished to have an
uncomplicated relationship to her baby. She appreciated my help very much but
it was a month to late for her, because by now she just wanted to relax and
enjoy her baby.
A few days ago she called me again to let me know that the littIe boy had
died of SID at 3 months that was thirteen days after she weaned him. I think
this is a tragedy and i am thinking a lot about what could have been done
differently.
Since this specific problem is very new over here I would like to ask if any
of you have knowledge or experience about babys who have some kind of an
atlantoaxial disorder of the neck and nursing difficulties or other
problems. I would also appreciate any references on articles or books dealing
with this.
There might also be a causal connection between KISS and SID, since i've
heard some MDs lecturing on this topic, (one of those had been Dr. Ramirez
from Chicago). I know the MD i sent her is doing some research on this
question.
I tried a search in the archives but did not get a match may be because i did
not use the correct or usual term. I am on "NO MAIL" right now, because i
have to do a lot of work in our new house and out there. So please answer me
also by private eMail.
Sorry for the length and my mistakes, but this might be interesting for some
of you as well.
Thanks in advance for any answer,
Regine Gresens, midwife, IBCLC, mother of Jonas (still nursing at 5,5 years),
Hamburg, Germany.
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