Marie, I remember that there was a recent discussion on Lactnet on this
topic, but I cannot remember the date.  Perhaps someone else can?  I cared
for many babies and children (and adolescents) with spina bifida as a
pediatric nurse, in my past life before I had my own bunch of kids and took
a leave of absence from my demanding hospital and teaching work (that is
now in its 15th year, so my information is not current).

The needs of a baby with spina bifida depend a lot on the severity and
location of the defect.  Spina bifida alone just means a defect in the
closure of the vertebral column.  It usually poses no problem.  Spina
bifida with meningocele means the meninges and spinal fluid protrude
through the defect in a fluid-filled sac on the child's back.  This needs
surgical correction, and then the child may go on to do rather well.  Spina
bifida with myelomeningocele means the sac contains spinal nerves as well
as fluid and meninges.  Depending on the location and which spinal nerves
are involved, the child will have associated problems.  Lower on the back -
perhaps bowel or bladder control problems, some problems with walking.
Higher on the back - more severe problems with bowel and bladder control,
paralysis, scoliosis, etc. necessitating braces or wheelchair. Some
children have associated hydrocephalus, necessitating shunts to route
excess spinal fluid around the obstruction and protect the brain. These
children are best cared for in a multidisciplnary clinic that includes a
pediatrician, pediatric nurse specialist in dealing with these children,
neurosurgeon, orthopedist, urologist, physical therapist, occupational
therapist and social worker.  They should have the resources to help
parents deal with the ramifications of this defect and find support systems
and resources in their local community.  This may involve traveling to a
large, university medical center for care. By the way, these defects can be
tested for during pregnancy, and it is felt that taking adequate levels of
folic acid in early pregnancy may be protective.

Until the defect is surgically closed, the infant must be kept prone to
protect the spinal nerves in the sac on the back.  It is also vital to
protect the area from infection.  After surgery, the area needs to heal,
and again, the infant will probably not be lying on his/her back.  The baby
needs to be carefully observed for indications that the head circumference
is not growing at an increased rate, and that the fontanels are flat and
not bulging.

I would think that as soon as the baby can be fed by mouth, breast milk
would be a tremendous way to help protect from infections.  The only reason
to keep the baby prone is to protect the surgical site.  Help the mother
find a way to hold the baby for breastfeeding that does not put pressure on
the baby's back.  You will have to look at each individual case to work
this out.  The mother should be double pumping to keep up her milk supply
until the baby can go to breast.  If the baby can eat from a bottle while
prone before this, certainly the bottle can be filled with breast milk, not
artificial baby milk.  It would be tricky to do cup feeding or finger
feeding with a prone baby, I think, but I haven't tried.

Breastfeeding would be of especial importance to this baby, who may be
facing many future surgeries and difficulties ahead.  And also, it is an
important way to help this mother bond to her baby, give the best nutrition
and love and closeness she can, feel that she is able to have this normal
and wonderful breastfeeding relationship that other mothers take for
granted. It is one way that she and her baby can be normal and close.  So
go for it!  All the positive reasons for breastfeeding are even more
important in this case!  And perhaps you can help the health care team
appreciate that too.

Hope this helps.

Anne Altshuler, RN, MS, IBCLC and LLL Leader in Madison, Wisconsin