Barbara writes:

"Noonans syndrome/Turners syndrome

I know nothing about Noonans, but some about Turners.  Another issue with
Turners is that often there is channel palate, and significant oral motor
weaknesses in neonates.  They often have weakness of suck  and feeding
problems.  Please check the palate configuration.  Channel palate mimics
some of the same challenges found in feeding infants with clefts of the
palate."

Like Barbara, I too know nothing (as yet) regarding Noonans syndrome; however,
I do know about Turner Syndrome (TS) since this is one of the areas in which I
am specializing.  The diagnosis of TS is often made by an expert who is
familiar with the physical characteristics of the disorder, in babies this is
recognized by puffy hands and feet pronounced skinfolds at the neck, and a
possibility of a high arch or bubble palate.  It is confirmed, or should be,
by assessing the chromosomes in the blood (karyotype).  TS is a disorder which
is extremely variable in the problems in which these girls may have.  One of
the hardest things that TS girls (women) have to deal with is the failure of
the ovaries to work satisfactorily so that they do not produce the female
hormones (estrogen and progesterone) or eggs - this means that they will not
be fertile.  Since the female hormones are needed to stimulate the development
of the breasts, these girls (women) need to be treated with estrogen therapy
which is started around 11 years of age. Moreover, there are few women with TS
whose ovaries continue to work through adult life.  About 4% of girls with TS
have enough ovarian function to enter puberty without any estrogen therapy; 1%
complete normal development on their own and have spontaneous menstrual
cycles; 0.5% have egg producing ovulatory cycles.

Babies who have been lucky enough to be diagnosed in utero or at birth may or
may not experience breastfeeding problems.  Some do present with the bubble
palate and as such have more difficulty breastfeeding and thus the mother with
sore nipples.  Trying different positions and a lot of patience in this
situation, like in all others, is the key for this mother-dyad pair.  Some
mothers have also found the Haberman Feeder helpful.  It is also possible that
some of these babies will have difficulties with chewing and swallowing and
mother may also need to know that additional problems may also arise when
introducing solids.  Women with TS have a normal uterus which responds well to
hormone treatment and as such it is possible for these women to have a child
through egg donation and fertility treatment.  Once the egg has been implanted
into the uterus, the placenta will produce estrogen hormones so that no
additional hormone therapy is required during pregnancy.  The question is, how
long after pregnancy must a women with TS start with estrogen therapy? How
will this extended hormone therapy affect the milk supply?  Will Reglan,
Fenugreek and the like help in maintaining these mother's milk supply?  I do
know that a lot of these women have been successful at breastfeeding; however,
they already go in with the TS label and all its concerns so what I do find is
that these woman need a lot of support and encouragement.  I am trying to find
a few more answers and talking to a few more mothers and endocrinologists to
find out other answers (ideas).  I, of course, wonder about the increased
importance of breastfeeding for both moms and babies with TS.

Sorry this is so long and I hope you find it helpful.

Smiles,
Yvonne
**********************************
Yvonne C. Bannister, LLLL, IBCLC
Private Practice/Baby's BestFeeding
"A mother holds her baby . . . who lovingly holds her breast and gets the
best!"