Almost a year ago I gave birth to my son.

And once again, life as a previvor has made the experience a little different for me and I thought I would share what I’ve learned about starting a family after a mastectomy.  One of the things I had to grieve as I went through my own decision-making process with BRCA is fact that I would no longer be able to breastfeed my future children if I underwent a mastectomy before starting my family.

I want to start things off with a rant.  Pregnant women are bombarded with messages about how ‘breast is best’ and formula is the devil.  It’s amazing how moms can be made to feel almost criminal for feeding a child with a bottle.  I think it’s important to realize that if you start a family after having a prophylactic mastectomy, you are going to do just fine for your child.

I had no idea how things would come full circle – and help me to heal after giving birth.  And while it’s challenging – my experience has been that breastfeeding is possible if you choose to try it.  So is providing breast milk for your child.

You are going to make it work – and your child will have the best of both worlds.

Here is what I learned….

Yes, breastfeeding is possible after a bilateral mastectomy using an “SNS” device

It’s not easy, but it’s an experience that you can have if you have had breast and nipple reconstruction.  I considered myself pretty well-informed in the options available to women with BRCA for various things, yet I had no clue I was going to be able to do this during my first day with my son before giving birth.

Birth plans are mostly futile, but adding this in mine helped….

A lot of moms-to-be make a birth plan in advance of their birth.  As I put mine together, I had to laugh at the futility of the whole exercise.  After all, I had no idea how I was going to respond to the pain while in the throws of labor.  Did I want the doctor to avoid using drugs Pitocin?  Sure!  …and that went out the window as soon as the safety of the baby and mine outweighed the wishes in my birth plan!

Looking back, the best thing I did in my birth plan was to write at the top:

• IMPORTANT: I cannot breastfeed. Please make sure that all nurses, lactation consultants, and doctors don’t try to instruct me on this because it is a painful reminder for me that I will miss out on this experience as I give birth.

Looking back, I’m really glad I went through this one point in my birth plan with the doctor in advance because *most* of the hospital staff really made an effort to be sensitive to what I needed.  As part of clinical routine, hospital staff are trained to ask about breastfeeding, and to support women going through the experience.  But having to remind people over and over that you are not able to breastfeed can be difficult and painful.  I didn’t want it to be a focus of my experience….to trigger feelings of grief when I already needed to must every last scrap of physical/emotional energy bringing a life into the world.

Finding support before and after giving birth.

Ironically, the only person I encountered during my hospital stay that was unhelpful was the lactation consultant.  She came into my room during her rounds and asked me if I had any questions.  I explained that couldn’t breastfeed because I had a prophylactic bilateral mastectomy due to a BRCA1 mutation.  After hearing her explanation about how expensive donor milk would be from a milk bank, and how I wouldn’t even get donor milk in time to feed my son at home, she asked me, “Isn’t this something you anticipated when you chose to have a mastectomy?”

In that moment sitting in my hospital bed still in a ton of pain, I felt so much anger flash over me.  It was clear she didn’t understand the decisions that women with BRCA mutations face at a young age.  I certainly hope you don’t encounter people like this during your hospital – but if you do…stick up for yourself.  I asked her to leave.

Luckily the nurses I had showed great empathy for what I was going through as I watched my son root around on my chest – following his instincts to latch.

One of my nurses was kind enough to connect me with someone on staff who had been through a mastectomy due to a BRCA1 mutation.  She came in to talk to me about her own experiences.  I had tears streaming down my face as she gave me a hug and told me that I was going to do just fine feeding my son.  They asked me if I wanted to try the SNS and I am so glad that I said yes.

Using the Supplemental Nursing System

So what is this device?  It’s called SNS – or supplemental nursing system.  And it gave me the chance to experience something I didn’t think I would be able to do!!

If you want to try it – request the SNS as part of your birth plan and talk to your OB/Gyn about it ahead of time.  I felt lucky that I had a team of nurses supporting me – but it’s a good idea to plan ahead and proactively ask about this if it’s an experience you want to have.

What it looks like.  

It’s a very simple device – basically a syringe and a tube that you attach to your nipple when your baby follows their natural instinct to find your breast an latch on.  It’s amazing how newborns are hard wired to do this in the hours after birth – and as I watched this happen I felt a wave of grief rush over me because of the decisions that I had to make due to BRCA.

And here is what it looked like….

 

Basically, it’s a tube that you attach to your nipple as your baby follows his instincts to latch when he’s hungry.  The advantages of using the SNS are that the baby is getting the same skin-on-skin time as if you were breastfeeding naturally.

It’s more for the experience than a long term solution.

While the SNS isn’t too hard to set up, using the device after a couple weeks wasn’t really going to be sustainable for me as a long term feeding option.  But the setup is and cleanup for me is infeasible with a hungry newborn ready to feed immediately, but I used it occasionally at home.

Many mothers understand that the beauty of breastfeeding is having a physical bond with your baby.  Going through this experience helped me to let go of my feelings of loss due to my mastectomy.  If you are someone going through this too – know that nothing prevent you from having that bond with your child.  Whether you use the SNS or not….whether you are able to breastfeed or not….you are going experience that bond.  At the end of the day, it’s all about what’s best for you and your little one and there are no right and wrong answers.

I hope this is helpful to anyone out there who has been through a mastectomy before having children.  I know that in those first days after giving birth, the grief of losing your breasts can feel intense.  You will get through it – and you are a wonderful mother.

In my next post I’ll write what I’m learning about getting donor breastmilk…..