Hi Everyone,

It has been a long time since I posted to Lactnet, but I thought that now 
that the story has a happy ending, I'd send an update out to all the 
people who have been following this saga all along.

Quick recap, if that's even possible, my son Bobby Zabarsky born at 36 wks 
after premature rupture (and I do mean rupture, this was no drip drip 
leak) at 22 wks.  (Amniotic sac healed itself after 24 hrs.even though it 
was highly suggested that I abort him).  He was born with single ventricle 
heart defect, required surgery at day 4, he did well, came home with NG 
tube and over the next 3 months learned to breastfeed well.  At 3 months 
of age, he went in for 2nd heart surgery, but this time did not fare as 
well.  He was critical in ICU for 3 months, having developed a 
complication called a "chylothorax" which means that the thoracic duct in 
his chest had been damaged during the surgery and he was leaking lymphatic 
fluid out into his chest wall.  With chest tubes in place, he was draining 
almost a liter of fluid/day, leaving him highly susceptible to septic 
infections.  The lymphatic drainage is stimulated by fats in the stomach, 
so this complication presented itself after he had begun nursing post op.  
So he had to go without food (breastmilk) for an extended period of time, 
relying solely on TPN, but the TPN was not sufficient nourishment for 
him.  Despite being NPO, he was draining almost a liter of lymphatic fluid 
a day, which caused him to developed septic infection after septic 
infection.  The septic yeast infection nearly killed him.

My husband devised a way to centrifuge my breastmilk in order to separate 
off the fat and be able to give him skimmed human milk, with a fat content 
of 0.02%.  This was far superior to any "low fat" formula they had 
available, and basically it was the only food he could tolerate without 
making the drainage worse.  As son as he started my milk (which was an act 
of God in itself...the medical staff was very reluctant to do this because 
they had never heard of it being done before), he began to heal his 
horrible wounds, the chest drainage cleared up, the infections stopped and 
basically his nutrition improved to the point where he was able to come 
home on the skim milk.  He was still NG tube fed at that point, and was on 
continuous feeds via pump.

He continued on the skim milk for a 12 week duration, and the chylothorax 
healed.  By the time we went back to full feeds with whole breastmilk, he 
had dropped a little weight, so to boost his weight with the whole milk, 
we centrifuged my extra milk, took out the fat, and added that fat to a 
bottle of whole milk.  The centrifuged cream was a whopping 420 cal/100cc, 
so he gained weight beautifully.The next three years he changed from an NG 
tube to G tube, being totally dependent on the tube feeds for about 2 
years.  The 3rd year he did very well eating orally, though he never did 
nurse again, and we were able to remove the Gtube after about 4 years.  
During those years, the concept of skimming of breastmilk for babies who 
developed a chylothorax after heart surgery was written up in Leaven (by 
me) and in the Annals of Thoracic Surgery by the two doctors who cared for 
him while he was in the PICU.  We have gotten calls and emails from all 
over the world, from LCs, RDs, MDs, RNs, asking for help in skimming other 
mom's milk for their babies who developed the same complication.  It has 
been frustrating at times, working with medical staff who just don't 
understand that this is not hocus pocus but just good old Mother's milk 
with the fat removed, not some kind of poison, but most of the time the 
work with other people has been very rewarding.  I'm just glad there's 
something available for these babies who need their mother's milk more 
than anyone else.

Fast forward to this last year and Bobby had the next, and hopefully last, 
heart surgery.  He was doing well initially, but day 5 post op he 
developed pneumonia, which again almost killed him.  (Am I supposed to be 
having fun yet?)  Again, initially, everything as far as the chest tube 
drainage looked good, but as soon as he got up to full feeds, the 
chylothorax reared it's ugly head again and we had to go back to skimming 
milk.  I just happened to have a freezer full of pumped milk from the last 
4 years, so though my supply is pretty small these days, I had plenty to 
give him in the hospital.

This time it was much different.  Last time, it took us a full 2 months of 
incredible persistence and playing our political cards just right to get 
the doctors to agree to let us try the skim milk.  Pretty much we had 
gotten to the point where he was dying, and they had nothing to lose.  But 
this time, in an instant, all our previous hard work was rewarded and it 
was THEIR idea to start the skim milk up as soon as possible.  I believe 
the speed at which we started the milk this time had a direct relation to 
how quickly he improved, and he was home in about 3 weeks.

So the end to this amazing story is that he is doing very well, the 
palliative surgeries have done wonders for his endurance, his color, his 
ability to breathe and basically he went from having O2 sats (the amount 
of oxygen in his blood) of 84 to 98%.  He's a different kid.   The surgeon 
says that we shouldn't need to do anything with his heart until "decades' 
from now, and with the way stem cell research and genetic research is 
going, I fully expect to drive up to a drug store when he is 30 and buy a 
new ventricle at the window.  He just had his 5th birthday and he is doing 
just great.  He is in school, has caught up in speech, his gross and fine 
motor skills are in the normal range for a kid his age, and just last week 
we had an X-Ray check and found that the chylothorax is once again healed, 
so he is back on full fat foods now.

I just wanted to thank everyone for all the support you have given to me 
over these years, when I cried on your shoulders when he wouldn't nurse, 
when he was in the hospital and we needed prayers, when I first posted to 
the list that we knew how to centrifuge milk for these heart babies and 
you all encouraged me to write it up.  the article in the Annals of 
thoracic Surgery gives this form of food credibility which has been a big 
help in allowing other mothers to pump and centrifuge their milk for their 
babies.  I'm sure in more than one case (probably in all) it has made the 
difference between life and death for these infants.

Thanks again, and God bless you all!

Trish Whitehouse, RN, LLL Leader

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