Pick up on the previous posts in this series 1, 2, 3, 4

If you have a daughter with Poland Syndrome, you and she will likely face the questions of reconstructive surgery; IF she should have the surgery, WHEN should she have it, and HOW/what type of surgery?

These are BIG decisions and should be considered carefully!!

Let’s start with the question of IF she should have the surgery.

It really is an IF.  Having reconstructive surgery is optional.  It may seem like a no-brainer, but before jumping to the assumption that, “Of course she will have surgery,” it’s wise to think through all that the decision entails. If you do your research up front then either way you will feel much more certain that the right and best decision for her has been made.

To save myself from the task of reinventing the wheel, I’ll address this topic with some excerpts on this topic from my book Overcomer: Rising Above the Challenges of Poland Syndrome.

Hopefully Poland Syndrome is not a taboo topic in your home.  Hopefully your daughter is learning to be comfortable in her own skin because of the influence you have in her life, the support you offer her and the open lines of communication you have with her.  But in case you are struggling to know how to address this, let me share a bit of my own story:

As I have mentioned, my family did not talk about PS when I was growing up. As I reached the teen years, I do recall a time or two when my mom mentioned that one day I would have surgery on my breast to correct my PS. I never questioned it, but I don’t know that I ever actually responded. I didn’t want to talk about it. As an athlete, everything in life was filtered through the question of whether X will effect soccer. All in all, I was not looking forward to any kind of surgery.

The day came when the topic was broached in a more definitive manner. I was traveling home from somewhere with my mom, just she and I. We stopped off to eat something and she stated that she thought it was time I “see a specialist.”

At first, I thought she was talking about getting a personal trainer for soccer, as my dad and I had a conversation to that effect just a few days before. With that in mind I quickly responded, “Yeah, Dad already talked to me about that.” Once the issue was clarified, however, I just wanted to sink into a hole.

I had such mixed feelings about the whole concept of surgery and, to some degree, I still do. On the one hand, I didn’t want to appear any different from others, so having surgery was a logical step. It would fill in my right side, where my breast would not naturally grow. On the other hand I wondered if it was vain to even care what others thought.

Shortly after this chat an appointment was made to meet with a cosmetic surgeon. Thankfully, we hit gold on the first try. We chatted with the doctor, who was familiar with PS, and seemed totally comfortable and at ease with the whole scenario. He took me into an exam room where one of the office workers helped him to set up. He inspected my breasts and took photos for the file. Despite being pleased with the physician, this was the beginning of feeling like a carnival freak show.

I left that appointment with my mom confident that this was the doctor I wanted to work with. His demeanor completely put me at ease. His office staff was wonderful, and I would come to look forward to my appointments. In a strange way, it was an opportunity to address the PS, even without having to talk about it.

With that stated, I cannot stress enough that this be a joint decision.

If you are a parent of a daughter with PS, or you are a female with PS, you need to think about and discuss the options.

Allow your daughter to be part of the decision making process here. If you have done a good job up to this point in keeping PS an open topic of conversation, then I suspect the transition into this phase will not be too difficult.

I still have second thoughts about whether getting the surgeries was the right decision. Sure, it’s nice to have a normal looking bust, but I am still lopsided since I cut my treatment short. I don’t know if others notice, no one has ever said anything, although I don’t know how one would broach such a topic anyway.

I sometimes wonder whether I’m denying who I am by having had the surgery. Since the surgery I had is very similar to that which women undergo after a mastectomy, I will sometimes ask myself, “If I had breast cancer, and had a mastectomy, would I want this surgery? Or would I accept my body as is?”

For me, these questions are largely a moot point, since I have had the surgery. I bring it up only to give you something to think about as you move forward and make these decisions.

Mom and dad, before you talk with your daughter, talk to each other about it. Talk about it from male and female perspectives. I always wondered how any man could want someone with an abnormal breast, only to discover that my

husband couldn’t care less. He loves me, scars and all. This will likely be a legitimate concern of your daughter.

Mom, bring up issues that you think may be issues. Dad, honestly give the male perspective, even if it’s ugly. It’s important that the two of you have a very honest dialogue about this so that you each understand the other’s perspective before you address this with your daughter.

Then you do need to talk with her. Allow her to do much of the talking. It doesn’t have to be a one-time talk. It may very well be a recurring discussion over the preteen years as she approaches adolescence. Allow her to express her opinions without your judgments. Don’t tell her she is wrong, at least not yet.

If this is an ongoing talk in your home, there is no hurry. She may change her perspective one year to another, even one month to another. Give her the space to work through this on her own. If you and your spouse have a strong opinion one way or the other, eventually you will need to have more definitive discussions, but even here, you need to allow your daughter to voice her opinion. You need to remember two things:

It is her life and her body, BUT

She is still young, and young brains do not always make wise grown up decisions.

If your daughter wants to delay, putting off surgery isn’t the worst decision. Surgery can always be done later, but you cannot undo a surgery.

So is surgery a good idea for your daughter?  I don’t know.  You need to work through that, but don’t overlook an important factor that was not even on my radar 19 years ago when I first met with my surgeon:

We live in a culture that equates women’s breasts with sex, when really women’s breasts were primarily designed to be the source of nourishment for their babies. In the months leading up to my daughters’ birth, I wondered if I would be able to breastfeed. I was in for a surprise in more than one way.

I had prepared myself for the likely fact that my right breast would not produce milk due to PS. I was ready for that. I wasn’t ready, however, to face regret over surgery decisions that resulted in added difficulty feeding.

It turns out my right breast did produce milk. It became engorged, as is supposed to happen. I was caught by surprise when I felt that sensation on my right side, but once I realize that despite the presence of milk, the baby would not be able to access it, I was overcome with deep sorrow.

You see, in the surgeries, the doctor moved my nipple, remember? In doing so, he closed off the proper exit for the milk. So here I had this milk but it could not get out. Now, I do not know how much milk my right side produced. I don’t know if it would have been a normal amount of milk, but I do know that milk was there.

I was told by the lactation consultant that the body often makes up for any deficit on one side, producing additional milk on the good side. That too may be true, but I will never know for sure. One of the surgeries involved a “lift” to my left side. This wasn’t directly related to PS, but it improved the symmetry, since a reconstructed breast doesn’t look the same as a natural breast. The doctor felt this was a wise decision, and being a teen who hated to talk about the whole topic, I said, “Okay.” Well, in doing this, he cut around the areola,

cutting through the nerves and ducts that participate in the lactation process. As a result, the amount of milk produced and/or accessible on my left side was severely reduced.

This whole issue was never mentioned in any of the pre or post-surgery appointments. After giving birth, I called the surgeon to ask about how the surgeries would effect my ability to breastfeed. His response was that I wouldn’t be able to breastfeed on the right side, but I should be able to on the left.

I have no gripes against my doctor personally, but I’d be lying to say that I wasn’t frustrated and disappointed that he

did not receive better training, especially in his chosen field. How could he not know the possible effects of breast surgery on the ability to later breastfeed?

I spent the first six weeks of that baby’s life crying half the time, longing to be able to nurse her like I ought. Thankfully, with my second and third babies, I had more success and was able to nurse on the left side, providing 30% to 50% of their nourishment for the first 9 months or so. After that point, my body could not at all keep up with their hunger levels. With each birth, there has been some sadness, yet and I am learning to release the guilt I feel over having done this to myself.

I share all this to encourage you to consider all aspects of the decision. Do the cosmetic benefits outweigh the potential loss of ability to breastfeed your babies down the road? I think the medical community can rely on their “facts” too much sometime, and forget that the human body is an amazing thing. My doctor was certain that since my right breast did not grow it would have no function. Well, I’ll never know how much function it had, but I do know the doctor was wrong.

I think we have tackled the IF as thoroughly as we can via the impersonal means of a random blog; next up WHEN.  If it is decided that surgery is the way to go, WHEN should that take place and by what means of surgery.

Stay tuned.