I read a request from a La Leche League Leader in Mexico, and planned on
just posting her question – but then thought better of it and asked her if
she could have the mom provide more details so that I could post to Lactnet.


 

The mom replied to the leader – and I was forwarded this information with
permission to post.  It is long, I’m sorry, because I know enough of you
read Spanish – and I believe you should “hear” from her rather than my
interpretation (I’m sure others could have translated it better, but here
goes):

 

 

Mi bebé tiene 1 año 10 meses y le diagnosticaron leucemia linfoblástica
aguda (LLA), los momentos de crisis han sido cuando lo ponen en ayunas
porque va a entrar a quirófano y le van a poner anestesia... se supone que
no debe de haber ingerido nada porque con la anestesia se puede
broncoaspirar, así que ni agua me permiten darle... claro que para dormirlo
y calmarlo ha sido todo una odisea porque el lucha conmigo y con mi blusa
para que le de pecho...


My baby is 22 months old and was diagnosed with Acute LymphoblasticLeukemia.


The critical moments have occurred when he must be kept fasting (NPO) in
order to go to chemotherapy and they plan to anesthetize him.   He is to be
kept from ingesting anything because with the anesthesia he may aspirate, so
I can give him nothing, not even water.   Of course putting him to sleep and
soothing him is an odyssey, as he fights with me and grabs at my blouse so I
will breastfeed him.  

 

ya había hablado yo con mi esposo para que cuando lo pusieran en ayuno (que
es una vez a la semana) que él se quedaría con Rubén David a dormir porque
como él no tiene pecho pues con él se iba a rendir más rápido y se quedaría
dormido...

 

I had already spoken to my husband so that when he is put NPO (once a week)
he would stay with Ruben David to put him to sleep because he has no breast
and he would give up sooner and fall asleep.

  

pero ahora resultó que la quimioterapia se suspendió porque le ha estado
dando temperatura, ya le han puesto plaquetas y transfundido sangre... pero
ahora dicen que tiene COLITIS NEUTROPÉNICA, que es algo así como que los
intestinos los tiene paralizados entonces no debe de ingerir nada para no
hacer trabajar a su sistema gástrico porque esto lo puede hinchar por los
gases que la comida en el proceso de descomposición secreta... entonces no
puede tomar ni agua y mucho menos el pecho... lo tienen con alimentación
parenteral. Me dicen que este ayuno dura días, y puede durar hasta 15 días o
más...

 

However, now chemotherapy has been suspended because he has been having a
fever and he has received platelet and blood transfusions.  Now they say he
has COLITIS NEUTROPÉNICA, which seems as if his intestines are paralyzed and
he can ingest nothing so as not to stress the gastric system as it could
swell due to the gas caused by digestion of the food.   [I don’t know the
medical translation – but it sure sounds like Necrotizing Enterocolitis?] So
he can take no water nor breast milk and he is solely on parenteral
nutrition (TPN).  I’m told that this fasting may last days and can even last
up to 15 days or more.  

 

ahí fue donde mi esposo y yo casi nos morimos del estrés, pensando en cómo
le íbamos a hacer cuando el bebé quisiera pecho porque con eso es con lo
único que se tranquiliza, entonces él fue y me buscó una pezonera y a la
pezonera por dentro le pusimos un pedazo de bolsa de plástico y me la puse
para que él siga mamando y no le salga leche... pregunté a líderes si había
una pezonera sin agujeros pero no me supieron decir, por eso optamos por
esta opción, ellas me dijeron que él no iba a aceptar la pezonera pues ya
está grande... pero LA ACEPTO =) la primera vez si lloro y me la quiso
quitar, pero lo acerqué al pecho y se prendió y listo. 

 

This is when my husband and I almost died of the stress thinking of what to
do when the baby wants breast, as it is only at my breast that he calms
down.  That’s when he went out and found  me a nipple shield and we lined it
with piece from a plastic bag and I placed it on my breast so that he can
suck, but no milk comes out.  I asked the Leaders if there was a nipple
shield without holes, but they weren’t able to tell me, so that’s when we
chose this option.  They said he would not accept the nipple shield as he is
big, but HE TOOK IT <smile> The first time he did cry and wanted to remove
it, but I drew him to my breast and he latched and done.  

 

Yo tengo 6 meses y medio de embarazo entonces ya no me sale leche como antes
por eso yo creo que no siente diferencia... porque él no lo hacía por tomar
leche, sino simplemente por estar en contacto con el pecho y sentirse a
salvo.

 

I am 6 ½ months pregnant and my milk doesn’t flow as much as it used to, so
I think that’s why he doesn’t feel the difference.  He doesn’t do it for the
milk but to be in touch with my breast and to feel safe.

Si me he preguntado si en realidad es necesario el ayuno cuando va a entrar
a quirófano o que le van a hacer algún estudio como un ultrasonido...



I have wondered if this strict fast is necessary when he must go for
chemotherapy or when he will be having an ultrasound study.


Al principio tuvimos muchos problemas aquí en el hospital por el pecho, cada
persona que se acercaba a ponerle un medicamento, a tomarle los signos
vitales, o simplemente a recoger la basura me decía que ya no le diera
pecho, las nutriólogas y la Dra. también! hubo un día en que ya no aguantaba
toda la presión que me solté llorando 

 

At first we had a lot of trouble here in the hospital about breastfeeding,
each person who approached to give him medications or take his vital signs
or simply collecting the garbage was telling me to stop breastfeeding.  The
nutritionists and the doctors too!  There was a day when I could no longer
stand the pressure and just let loose crying.

 

 

Jeanette here: 

 

At times I think we forget how resourceful our parents can be – what a
solution this dad came up with!

 

So her question really had to do with dealing with the instructions to avoid
anything by mouth prior the chemotherapy (once he recovers from his current
crisis and it is resumed), as she is not sure this is necessary because she
has received so little support from the medical community.  

 

 

Jeanette Panchula, BA-SW, RN, PHN, IBCLC

California USA

 


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