Thursday, October 23, 2008

Milking, The Issue

Two weeks down, two to go until the rescheduled surgery date: November 6th.

It goes both too slowly and too quickly.

All around us people are coming down with colds. We wash and sanitize our hands constantly; we don't let sick people (or people who've been around sick people) come near us.

We are the Family in the Bubble.

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I have come across the most astounding thing--courtesy of our good friend Amy Wells, ND who was at a lactation management class all last week.

Apparently, there is no scientific proof, no clinical evidence supporting the mandate that Zoe must not breastfeed during and immediately after her bone marrow transplant.

Amy forwarded me an email thread dating back to 2001 discussing this very fact.

People involved in this thread included two lactation specialists, and an MD in at the University of Texas Medical Branch named Armond Goldman who is an immunologist specializing in the study of breastmilk. (!)

His email in the thread said the following (the highlights are mine):

"Thank you for your inquiry. No controlled studies have been conducted concerning breastfeeding and stem cell transplantation. Because of the lack of information, I have never addressed this issue in any of my writings.

There are theoretical reasons to avoid breastfeeding in such a circumstance if the child has to be immunosuppressed to prepare for the transplantation. The reason stems from cross-fostering experiments conducted by Beer and Billingham some 30 years ago in highly inbred experimental animals. They showed in such animals that ingested T cells from milk colonized the cross fostered infant animals and caused a wasting disease. It is unclear whether maternal T cell engraftment occurs in immunodeficient human infants as a result of breastfeeding. The reason for the uncertainty is that most maternal T cell engraftment occurs during the intrauterine period as a result of T cells colonizing the fetus via the placental.

There are reasons to believe that breastfeeding would be beneficial 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.

It is difficult to make a recommendation when you do not have all of the medical information about the patient. In general, I would encourage such mothers to continue to breastfeed. I would also be obliged to perdiodically make sure that the blood T cells in such children were hers and not her mother's.

I wish I could be of more assistance, but there is little information to provide a more substantial recommendation. If you have any other question, email me or call me.

Dr. Goldman"

I dialed the phone number listed at the end of the email. The woman on the other end of the line explained that yes, Dr. Goldman was still reachable at this number, but they were in the midst of chaos and displacement due to the recent hurricane in Galveston--did I want his cell phone number? Well, sure!

He answered his phone directly. A very pleasant older man with a relaxed Texan drawl. In the next 45 minutes he told me that nothing had changed between 2001 when he wrote the original email and now; there was still no documented proof that breastfeeding was a danger to the transplantation process. But, there was no documented proof that it wasn't either.

Not something that is easy to study through a systematic scientific study, he said.

However, in his years of studying breastmilk, he asserted, nothing has led him to believe that it would be harmful in a situation such as Zoe's. When asked, he said that he would be happy to talk to our oncologist, Dr. Thomas Manley, about this very subject.

Two days after my conversation with Dr. Goldman, I found myself on the phone having an interesting chat with a mother, Beth, who breastfed her baby daughter through a liver transplantation process. Told that her daughter's liver could not process the fat in breastmilk, she did have to supplement with formula (which was less fatty) before and during the transplant process. But, once in recovery, and given larger portions of breastmilk, her baby had what doctors agreed was an astounding recovery.

Beth is convinced that this was due to the healing powers of breastmilk. She told me that the main transplant doctor involved agreed with her assessment.

I have written a long email to Dr. Manley asking him to provide me with the evidence that supports the assertion that breastfeeding Zoe through her bone marrow transplant would be harmful for her.

I don't know if it's irrational hope, or mother's intuition, but I am convinced that nursing her through it will help her fight life threatening infection (a very real and dangerous concern in this process).

It's been a few days, I haven't heard back from him.

Meanwhile, I am continuing to sleuth down other instances where babies have been nursed during transplantation. I have a line on a lactation specialist in Texas who claims that she's observed both stem and bone marrow transplants done in the presence of nursing--without harmful side effects. I am waiting to hear back from her as well.

I'll let you know what turns up.

7 comments:

Gaylene Meyer said...

My mother's intuition is speaking up loudly in support of your breasfeeding Zoe, too! Consider also asking about the positive psychologyical impact of breastfeeding during this stressful and difficult time for her.

Anonymous said...

This is good news! While I know it's still "up in the air", it's uplifting to know the matter has been and continues to be researched - it really does seem intuitive that the best thing would be to continue nursing. Since no one may be able to give you a definitive answer as to what you should do, this may be one of those times when the decision is yours - and I trust you'll make the best decision. Zoe is your DNA - you'll know what's right.

Monica

Laura said...

You go, girl. question, question, question. Love your doctors, but they don't know everything, and they DO do things that are unscientific sometimes. They mean well (usually/mostly) but some of it is "risk avoidance" which is different than science/healing.

What I can share is that Ray got sick after 3 months. The conclusion my immunologist drew was that as soon as my breastmilk changed to allow his own theoretic fledgling immune system to take over, he suddenly had no defenses. That's when he began manifesting symptoms that led us to discover he had Severe Combined Immune Deficiency.

A few months later it was a very odd development when they told me I had to stop breastfeeding in prep for his BMT. When I asked how this could matter, based on our empirical data that my breast milk did NOT keep him well anymore, they mentioned concerned about any "trace" immune cells mucking up the transplant. Ray took to soy ok, so I went along with their request. It felt ok to do that, even though it was a sad thing for me personally.

I have to say there was one other time earlier when they wanted me to stop breastfeeding him because they he had a terrible case of thrush and reflux. He had lost so much weight and was dangerously small, I said, "I think the chances of him dying from low birth weight are much greater than the risk of this exacerbating his reflux ... Forget it!" They backed down on that one, and I'm sure I was absolutely right.

So just make sure you are clear for yourself about why you are deciding to do X versus Y. You have to sort out all kinds of emotion/endings here, too, and that's hard. But if you sift thru, and you feel strongly it's best to breastfeed, you do that. And then never, ever allow yourself to shoulda/woulda/coulda yourself. Deal? :)

And one more thing.. you will still be able to comfort her if you decide to stop breastfeeding...she will still be bonded to you. You are doing this together.

Loving you all,
Laura

Aimee said...

This may be one issue where you disagree with your doctors. Thankfully the doctors at Stanford were perfectly fine with David nursing through transplant. Guess what? He did not have ONE mouth sore! He also did not throw up much! Breast-milk was the only thing he would eat some days. He was never on TPN because I weighed him religiously. I did have some conflict with the nutritionist but I kept weighing him and feeding him whatever I could find that was nutritious and high calorie to give him the extra calories he needed. The extra calories are important for the new bone marrow to thrive and the body to fight off any infections. Yes, and the emotional bond for my son and myself was so strong. I felt breastfeeding gave me some control over the situation, which can feel so out of control when doctors and nurses have all the control over your child's survival. David's doctor, Dr. Weinberg, agreed that the breastmilk helped coat David's intestinal track and gave him the extra protection he needed. He has not had any internal GVHD. I think with persistance and motherly emotion, your doctors will understand your fears and grant your request.

One more thing is that I am positive for CMV (cytomeglovirus) 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.

I'm sorry I cannot find that article I mentioned on my blog. I will keep looking for it. I feel bad for not citing it. I usually cite everything.

Thank you for your interest in this topic. You have been the first BMT breastfeeding mom that I have met. Please stay strong in your intuition; it will not only benefit Zoe during transplant, but will benefit her many months after! Breastfeeding during transplant is the only way to go.

Aimee McNally
davidmcnally.blogspot.com

Aimee said...

Regarding the Recent Advances in Treatment of GVHD, just click on my blog entry title and it will take you there, but here is the link:

http://www.clinmedres.org/cgi/reprint/2/4/243

Aimee said...

I'm not sure this will help, but rotovirus and andenovirus are very common virus' for BMT patients.
From my recollection, David had neither of these, but I know of other BMT children who were not breastfed and did contract them. Given that, here is yet another article that supports breastfeedings positive effects: http://www.pubmedcentral.nih.gov/pagerender.fcgi?artid=443262&pageindex=1

Anonymous said...

Kellie- I am always so happy when I tune in to Zenatch and read little gems of good news like this. You have met an amazing collection of doctors in this process and your persistence and tenacity seem to be leading you to ones who connect with your beliefs. I am an enormous proponent of the healing powers of breastfeeding for both mother and child. There is probably few things that comfort Zoe more and it will undoubtedly bring your stress level down too. Lots of love - Carrie N