My Breastfeeding Experience with Eleni: Milk Fistula and Upper Lip Tie

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In honor of World Breastfeeding Week, I’m going to share with you my breastfeeding experience with my first baby and an unusual complication I experienced: A milk fistula.

Planning to Breastfeed

When I found out I was pregnant I naturally assumed I would breastfeed.  That’s what my mom did so I planned to do the same.  The birth center we used offered a breastfeeding class for first time parents so I went to that and read Ina May's Guide to Breastfeeding.  It was hard to attend a breastfeeding class without already having the baby as I had no idea what kinds of problems I might face yet but found it still had some good information- I may have retained about 5% of it.

Then I Found a Lump in My Breast

At this point I was well into my third trimester, decorating the nursery and folding baby clothes.  I was definitely not expecting to have a wrench thrown in the mix of finding a small, hard lump in my right breast.  I told my midwife about it who confirmed that she felt it too and ordered a breast ultrasound. I was given the option of ultrasounds every 6 months to keep an eye on it or have a biopsy.  I was so close to delivering we decided to wait until after having the baby to have a biopsy done.

Eleni's first bottle with Daddy.

It was supposed to be a quick and easy procedure where I got a shot of lidocaine and then the needle biopsy where they pull out a tiny piece of the lump to see what it is. I was scheduled for the procedure at 2 weeks postpartum.  My husband, mother-in-law, and baby were in the waiting room during the procedure.  It took a couple hours so my husband Clint gave Eleni her first bottle of expressed breastmilk while they were waiting for me.

Breast Biopsy

The procedure was pretty straight forward but there was a bunch of back and forth about me breastfeeding with the nurses because of the lidocaine shot and the possibility of that getting into my milk.  No one had mentioned to me that this was a possible concern until I was laying on the table ready for the procedure or I would have done some research before hand about what I was comfortable with. I was getting lots of bad information from a resident who clearly knew nothing about breastfeeding and just told me not to breastfeed if I was worried about it (um I have a 2 week old baby!?). Anyways, we did the procedure and I had some immediate oozing from the incision site.  The nurse wiped it up and said I shouldn’t worry about the lidocaine because that’s what was oozing out.  They covered me up with gauze and sent me on my way.

Thankfully the lump was nothing serious, an adenoma I think it was called?  That was a huge weight off my shoulders as the last thing a new mom needs the first few weeks postpartum is the added stress of a breast cancer scare. There was a problem though; that wasn’t lidocaine that was oozing out of my incision. It was breastmilk!

Complications from the Procedure

The biopsy had knicked a milk duct which caused breastmilk to freely flow out of the incision site.  The incision would heal from the inside out as long as I kept it clean and dry, but how was I supposed to keep it dry if it was constantly oozing breastmilk? I was putting maxi pads down my shirt and soaking through them every 30 min to an hour.  I couldn’t just seal the wound because the milk would internally pool and could cause an abscess.  I had no idea this was a potential complication of this procedure or I may have opted to have it done while I was still pregnant or opt for the recurring ultrasounds instead.

So now not only am I two weeks in to life with a newborn and painful nipples from trying to figure out this whole latch thing, but I’m spewing milk from the top of my right boob like I have a third nipple! I learned that this is called a milk fistula.

What is a Milk Fistula?

Milk fistula is an uncommon condition which occurs when there is an abnormal connection that forms between the skin surface and the duct in the breast of a lactating woman, resulting in spontaneous and often constant drainage of milk from this path of least resistance. A milk fistula is usually a complication that results from a needle biopsy or surgical intervention in a lactating patient.

Trip to San Diego, CA and Meeting With an IBCLC

When Eleni was about 6 weeks old, I flew from Pittsburgh to San Diego with her for a job interview. I was still constantly leaking all over the place so I had about 3 maxi pads stuffed down my shirt and taped to me during this interview.  How’s that for trying to stay low stress lol. I was so worried about leaking through my shirt!

Thankfully this trip was over Thanksgiving so I got to spend it introducing her to the extended family.  While I was in town, my mom arranged for a lactation consultant to come to the house to see if she might be able to help me with this milk fistula problem.  She didn’t know much about them but did some research and was a huge help.  She explained that a milk fistula will either heal on its own over a week or two, heal on its own over 3-4 months, or not heal until you stop breastfeeding.  I really wanted to breastfeed until at least a year so that last possibility was a little scary.

I decided to focus on working through our other breastfeeding problems and hope for the best with the milk fistula.  The LC identified an upper lip tie as the likely culprit of Eleni’s latch issues.  We had the correction done when I got back to Pittsburgh and ALL of her latch problems were gone within 24 hours! It was amazing.  She had been transferring milk fine but had a very shallow latch and her upper lip curled under not out meaning it was extremely painful for me.  She also had trouble keeping the seal so she would constantly pop off and swallow air making her gassy and miserable.  All of that was gone after a quick 30 second correction with the Pediatric ENT doctor.

How I wish I saw an IBCLC sooner than 6 weeks.  The pediatrician didn’t see the lip tie at our first appointment and assumed everything was fine because she was putting on weight but what about me!? My nipples were not fine and it was making our breastfeeding journey so much more difficult than it needed to be.

The best breastfeeding advice I could possible give is to see an IBCLC week one whether you are having problems or not.  It would have saved me weeks of pain.

So what happened with the milk fistula?

It healed on its own at about 3 months postpartum after spending a small fortune on gauze and maxi pads. I was so happy when it finally closed up. By now, I had no pain breastfeeding and it was finally easy! It was hell at the beginning but we managed to work through it and went on to have a successful nursing relationship until weaning when she was 2 1/2 years old. I even tandem nursed those last six months with her little sister which is something I never thought I would do in a million years.

Breastfeeding is HARD, but I'm so glad we stuck with it through the hard parts at the beginning.  There is no way I could have done it without the amazing family support I had as well as access to a good IBCLC.

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In honor of World Breastfeeding Week, I’m going to share with you my breastfeeding experience with my first baby and an unusual complication I experienced: A milk fistula. Never heard of it? I hadn’t either. #milkfistula #breastfeeding #cancerscare