Milking, Part 2

Email received yesterday from Dr. Manley in regards to nursing during Zoe's BMT:

"Hi Kellie,

Sorry for the delayed response, I have been looking into the matter a little bit, and I should have passed that along sooner. We have allowed mothers to feed their infants undergoing BMT irradiated breast milk, which eliminates the risk of transmitting maternal lymphocytes to an immunosuppressed host, which is the real risk. The problem is the availability of that 'irradiator' for this purpose, and I'm trying to find out more.

Thanks for your very good questions. How is Zoe doing? When is her surgery rescheduled for?

Thomas"

My response to Dr. Manley:

"Hi, Dr. Manley,

Thanks for getting back to me. I am not interested in feeding her irradiated breast milk-- I want to nurse her from the source.

My understanding, again, is that there is no documented proof that maternal lymphocyte transmission to the immunosuppressed baby is actually a danger during a BMT. I am uncovering case after case of babies who were nursed while undergoing bone and stem cell transplants without incident.

I had an email exchange with one such woman who directly breastfed her son during the entirety of his BMT. Apparently she was even a carrier for CMV (cytomegalovirus), as they found out later, and this did not affect him at all. (Controversial, I know.) She writes:

'One more thing is that I am positive for CMV which I did not find out until after his transplant when I donated blood. Many people are positive for CMV. CMV is very dangerous for a BMT patient. Nothing was transmitted to David. I did have a bad cold during transplant and still, nothing was transmitted to David through my breastmilk. The doctors at Stanford agreed that breastfeeding helped David in many ways.' (emphasis mine)

GVHD (graft versus host disease) for her son has been limited to chronic skin GVHD--but no digestive tract signs of it at all. His donor was an unrelated 6/6 match.

I found another woman who breastfed her baby during the entirety of his BMT process, again, no complications. In both cases neither baby needed TPN (total parenteral nutrition--fed via tube) as neither one lost any weight on a breastmilk diet during the procedure. The first child was two at the time, the second, was four months old (which predates the 6 month point at which the 'leaky gut' effect of the baby's digestive tract stops). I don't know whether he has GVHD issues, but I could find out. I do know that he is 14 months post BMT and apparently doing very well.

Both of the BMT teams for these different babies encouraged the mothers to breastfeed--Stanford for the first, Atlanta Children's for the second.

Did you manage to talk to the immunologist I told you about? Again, as I understood it, his argument was that IF maternal lymphocytes managed to somehow colonize the baby from the breast milk, the immunosuppressants should be able to take care of them.

Again, as I wrote you before, he stated that:

'There are reasons to believe that breastfeeding would be beneficial (during a BMT) because
of the protection against many types of infectious diseases that affect the gastrointestinal and respiratory tracts. This is particularly important to a child who is immunosuppressed.'

Here's a link to an article about breastmilk preventing rotavirus and gastroentiritis, infection risks as I understand it, during BMT's:

http://www.pubmedcentral.nih.gov/pagerender.fcgi?artid=443262&pageindex=1

It is not my intention to be a pain or disrespectful of your vast knowledge in your field, but I am sticking to my guns that I need for you to prove to me that breastfeeding her would be detrimental to the process, or even greatly risky, before I agree to weaning her.

I hope that if I decide to nurse her, despite your wishes, that it will not be a 'deal breaker' with you. You must know that the last thing I want to do is endanger my child. Everything I am reading and coming across on the subject, however, is telling me that breastfeeding her through the BMT will be greatly beneficial for her.

Zoe is doing fabulous. No one can accuse her of 'failing to thrive', as it seems most babies with osteopetrosis seem to suffer from. Her surgery is rescheduled for this coming Thursday. We have been keeping her in a bubble to avoid another virus.

Thanks for your time and consideration,
Kellie"

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You know, it's not much fun to go toe to toe with a doc--especially one who holds my daughter's life in his hands. I just have to trust that breastfeeding her will be a good thing. I don't believe I am being naive.

But, it still is scary to outright oppose a doctor.

Tomorrow we have pre-op appointments for Zoe. We're planning to put her clear plastic rain shield over her pram so that NO ONE breathes on her in that hospital. She is going to have that surgery on Thursday--and it will be a success, by God!

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Two things:

Note the added links to the right of the current post; there are informational websites listed about our situation. (I'm finally ready to research)

And, who is borrowing season one of "Six Feet Under" from us?? I honestly can't remember! I don't need you to return it right away, but I just want to know who has it--thanks!