In response to the questions regarding the infant with newly diagnosed VSD...

First of all, for those who are not familiar with congenital heart defects,
VSD is ventricular septal defect which is a hole in the septum separating the
right and left ventricle.  It causes mixing of oxygenated and non-oxygenated
blood within the heart.  It can result in poor perfusion, increased work of
breathing, poor feeding with increased respiratory rate, and most of all it
can cause growth failure.  Sometimes the defect is repaired early, especially
if it is large or if there are other accompanying defects.  But most often
they wait till the baby grows and is bigger.  Sometimes the hole will close
spontaneously towards the end of the first year.

The problem is that these babies are often failure to thrive when their VSD
is unrepaired.  Their metabolic rate is increased from the extra work the
heart is doing and they often get tired from taking oral feeds.  A typical
pattern is for a baby to suck for 10-15 minutes, take 10-15 cc and then just
stop.  Many require a naso-gastric tube for adequate calories.

They are often fluid restricted to reduce the workload on the heart and
prevent edema from congestive heart failure.  Keeping their caloric intake
high enough to promote weight gain is very challenging.  They often require
at least 27 calorie formula or even 30 calorie with the addition of polycose
and/or MCT oil.

As for breastmilk, I recently read a study from the Children's Hospital in
Texas looking at premie growth rates with fortified hindmilk.  The babies had
a much better rate of weight gain when they were given only hindmilk.  They
had the mothers (who needed to be producing 30% more milk than their babies
required) discard the first 2-3 minutes worth of pumped milk, and then save
the rest.  They estimated the caloric value of this milk at 24 calories per
ounce.  Maybe Sophie's mom could try this.

It is possible for Sophie to eventually breastfeed.  However it wasn't clear
to me if she will be discharged from the hospital before her surgery.  Some
hospitals will not allow sick babies to breastfeed (especially with cardiac
defects) because they need to accurately document I's and O's.  (I've offered
to do test weights but the physicians and nurses didn't go for it).  As for
after surgery, I've had varying success transferring babies from the bottle
to the breast.  Most are poor feeders anyway and don't do well with any
method of feeding.  However there is no real contraindication to BF and
studies show better oxygen saturation with BF than with the bottle.

Encourage Sophie's Mom to rent a hospital grade pump.  She may be pumping for
several months.  The benefits of breastmilk will help keep her baby healthier
during this very difficult time.  She'll need lots of support to continue
with this regimen.  It can be exhausting for the mother.  If the doctors
allow it, I recommend offering the breast several times a day (baby won't do
much) and provide all her nutrition via NG tube to prevent nipple confusion
later on.

Breastfeeding babies with congenital heart disease is possible but they often
continue to require supplementation for weight gain.  I have been working
with these babies for two years at Children's Hospital of Philadelphia.  Some
of the cardiologists are very supportive but we have a long way to go.  Good
luck to anyone working with these families!

Rachelle Lessen, R.D.  (functioning as a LC, working on becoming board
certified)
Happy Passover and Easter to all fellow lacnetters!