Breastfeeding, the ICU, support, and Facebook- Support that keeps on giving

Have you seen this image?

 

When Serena Tremblay responded to a call to share breastfeeding photos on The Leaky Boob Facebook wall, she didn’t think she was sharing anything extraordinary as she sat at the computer with both her sons, Gooney Bear-17 months  and Gorgeous-3 years, with her and her husband making dinner.  It was the first breastfeeding photo she had of Gooney Bear and she just wanted to share.  Including a bit of explanation, the Alberta, Canada mom celebrated her breastfeeding success with the community on The Leaky Boob:

“A nurse helping my 1 day old son nurse while I was in the ICU following his birth. At this point I was a quadriplegic and could only feel his soft hair and skin when he was placed by my neck to cuddle. Breastfeeding is the reason he was allowed to stay with me in the hospital for 5 months while I lived on the physical rehabilitation unit learning how to walk again (complications from when he was born). It’s amazing how much baby stuff you can fit in a hospital room. We are still breastfeeding strong at 16 months! If this is not a success story I don’t know what is :D”

Within minutes there were hundreds of responses and within hours, thousands of shares.  The photo went viral, moving across the internet as an inspirational image and celebrating not just one woman’s breastfeeding success story against all odds, but celebrating every breastfeeding success story for all women.

Even if that photo captured Gooney Bear’s one and only feeding at the breast, this is a breastfeeding success story.  As it is, however, Gooney Bear is now 17 months old and still breastfeeding and these weren’t the only issues Serena and Gooney Bear had to overcome.  Together the pair battled tongue tie for 9 weeks, needing to use a nipple shield, dairy, soy, and gluten sensitivities, and all that on top of the 5 months Serena was hospitalized.

The magnitude of attention sharing this one photo received was a bit overwhelming for Serena.  To her, while this photo documents a personal success story and extraordinary time in her own life, it is also something that just is.  We don’t always realize how our stories, our struggles and triumphs, can impact someone else.  People were so inspired by Serena’s photo; moms told her they were getting ready to quit breastfeeding due to difficulties and her photo encouraged them to find a way to keep going.

“Someone else is in tears, not sure they can keep going, but they see my picture and they think they can do it, they can get through what they are struggling with.”  Said Serena when she and I talked on the phone last week.

The result of a rare birth injury, Serena was fully quadriplegic after the birth of her second son on October 19, 2010.  Her memory of everything following his birth is full of different events but lots of holes and no sequential order.  She was intubated, lucid, in the ICU, and could only feel sensation from her neck up.  The nurses and her husband would place Gooney Bear in the crook of her neck so he could snuggle and so she could feel him at least a little.

Nobody really knew what to expect for Serena’s recovery.  She regained the use of her arms on day 2 and finally saw Gorgeous again for the first time on the 24th, 5 days after the birth of his little brother.

“One of the hardest moments I’ve ever gone through, you know?  When he walked into the room, it felt like he was shy and didn’t know me anymore.  He was 22 months at that time.  After a little bit he came and sat on the bed with me and had a snuggle.  It was very hard.”  She shared.

There’s no doubt Serena Tremblay is an incredibly strong woman.  Fighting an uphill battle with her body, she never gave up.  But she says that’s not how she got through that difficult time.

So how did she get through it?  In talking with Serena one main theme emerged: support.  Her husband.  The nurses.  Her family.  The other patients on the rehabilitation floor when she moved there.  Family members of other patients.  The hospital volunteers.  The lactation consultant.  How did she get through it?  With support.  Lots and lots of support.

In the face of not knowing what was going to happen to his wife, Serena’s husband, a heavy duty mechanic, stayed with her and then with Gooney Bear.  When she was in the ICU, he slept in her bed on the maternity ward so he could be with their baby.  He advocated for breastfeeding for the pair and he and the nurses took turns helping their precious baby boy latch.  Without asking, he took pictures, a bunch of pictures and that’s how the first feed was captured on film, something for which Serena is very thankful.

Support.

The nurses on the maternity ward went above and beyond, the first nurse coming down to hand express Serena so her little boy could have his mom’s colostrum that first day.  There is much love and gratitude in Serena’s voice as she speaks of her nurses, they were heros that got her through every day.  From that time hand expressing her milk, the nurses just kept bringing the baby over on demand, whenever he was hungry, to the ICU to breastfeed until her husband or grandmother could help her or she could do it herself.

Support.

Never once did she hear anyone say “why don’t you just put him on the bottle.”  People said that, people that weren’t involved, but not the nursing staff.

Support.

It’s clear to Serena not only how she got through, but how she went on to have a positive and ongoing successful breastfeeding experience with Gooney Bear.  “Support, support, support.  I’d like to narrow it down and say it was one person but it was everyone.  Why am I successful?  Probably only because of support and because I was determined, I just wanted to do it. Gooney Bear was able to stay with me in the hospital because I chose to breastfeed.  If we had given him bottles they would have sent him home with my husband.”

At a time when nurses, doctors, and hospitals often get a bad rap about providing insufficient breastfeeding support and sometimes down right sabotaging breastfeeding relationships, Serena’s story not only offers encouragement for moms encountering breastfeeding struggles or indeed as a testimony to the strength of the human spirit; her story also gives hope for what true breastfeeding support in the hospital can look like.  Serena’s hospital didn’t realize at the time, but they’ve gone on to provide breastfeeding support extending well beyond this one patient.

When her tube was removed and she was finally able to speak, Serena refused to say anything until she was holding Gooney Bear: she had yet to tell him she loved him.

“I wouldn’t speak to the nurses because I wanted my first words to be ‘I love you Gooney Bear.”

Through out her 5 month hospital stay, ICU for 4 days, maternity ward for 1 month, and the rehabilitation unit for 4 months; Serena was able to keep Gooney Bear with her, breastfeeding on demand and pumping for him to have expressed milk while she was at one of her regular therapy appointments.  Managing her way around the ward and even the whole hospital, Serena says how it’s amazing how much you can do in a wheelchair with a nursing pillow and a baby on your lap.  Often a breastfeeding baby.  During that time she dealt with many of the common issues breastfeeding moms face.  Once a nurse pulled a double shift and helped care for Gooney Bear during the night so she could work to get rid of a stubborn clogged duct before it turned into mastitis.  Even for the regular every day challenges of parenting life she had support, the nurses and other patients or family of patients would take turns holding Serena’s little guy so she could eat, after all, who would turn down cuddling a precious baby?

Today many of those relationships continue, their support and all that Serena and Gooney Bear gave back formed bonds of friendship that last.  Friends from the rehabilitation unit remain in their lives.  Serena and her family go back and visit the hospital staff regularly and they are all happy to see them, often crying at the progress Serena has made since she left the hospital over a year ago.  Her recovery has been remarkable and though it’s ongoing she’s accomplished so much and doesn’t take for granted what she can do.  Their family is like any other family, they like to do things every normal family likes to do, “we just have to do them a little differently” Serena shares.  Their friends understand, they were there, they have seen where they’ve come from, they supported them in the journey and in the ongoing part of that journey today.

One of the nurses that helped Serena so much is expecting her first baby soon.  Serena is looking forward to being able to support her now, encourage her in her own breastfeeding and parenting journey.  Understanding how crucial support is, Serena is already there.

“It was a horrible thing and I wish it hadn’t happen – but it did and so many good things came about from it… if my story can help one mom to get support, receive support, or give support then it was worth it.”  And so Serena shares her photo and her story.

Sometimes I am asked why people share breastfeeding photos on Facebook and other social media settings.  This is why.  It’s celebrating our personal triumphs- whatever they may be; sharing a special moment, encouraging the global community of mothers by normalizing breastfeeding, inspiring others, and giving support.  Thousands of people have been inspired and encouraged by one photo with a simple caption.  Our stories make a difference and if a picture is worth a thousand words then sharing breastfeeding photos is like breastfeeding support spreading exponentially around the world.  In the global community we’ve moved on to via the internet, sharing our photos and stories online can often be the start of support for someone.  Just ask Serena, you never know how one image can make a difference.

 

My gratitude to Serena for being so brave in sharing the original photo in the first place and then to be willing to open up and share more of her story for my readers here.  All photos in this post are the property of Serena Tremblay and used with permission.  To protect the privacy of her family, Serena opted to use nicknames for her children and as the details regarding the birth injury were not important to the point of the story, she asked that they not be included in this article.  With an open medical investigation into Serena’s case, we appreciate your respect of her privacy on these details.  ~Jessica 

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The Problem Continues

Hi XiLan,

I again apologize for the inconvenience you have experienced. The Page was disabled initially disabled in error and appears to have been affected by some sort of glitch.

We are currently looking into the matter that you reported, and will respond as soon as possible. Please be assured that Facebook takes users’ concerns around content very seriously. We apologize for any inconvenience this delay might present.

Your Page has again been reactivated and you should be able to use it shortly.

Thanks for your understanding,

Lysander
User Operations
Facebook

(XiLan is the username of Jessi, the person that originally helped me set up The Leaky Boob on Facebook.)

The thing is I don’t understand.  It sounds like he just said: “I’m sorry, we here at Facebook don’t know what we’re doing.  It must be some sort of computer thing, it’s completely out of our hands.”

Mark Zuckerberg, get someone who knows what they are doing STAT!  As TIMES man of the year, surely you understand the importance of hiring people who are not only experienced and trained but also give a damn when they screw up.

The thing is, this “glitch” he speaks of continues to disable the accounts of women, other pages and groups that have shared breastfeeding photos.  Additionally users and pages deactivated receive little to no response to their inquires as to why.  I got some sort of an apology and an excuse but most do not.  It’s starting to feel like we’re living with an abusive partner.  Many of us that share breastfeeding photos are on edge now, there has been a rash of deletions and more coming out and saying they would share breastfeeding photos but they are afraid of getting pulled.

So why do we stay?  I’ve addressed before why The Leak Boob is needed on Facebook and why we choose to carry on our little community there.  But still, wouldn’t we feel safer if we moved on to some place where accounts don’t just suddenly disappear?

Of course we would.  However, I’m refusing to accept being told to hide to feed my babies, virtually or otherwise.  The easy access on Facebook makes it such a simple step for women and those that support breastfeeding to participate in The Leaky [email protected]@b community, providing a wealth of information and resources in a place where they are already active and connected.  Beyond that though having an active presence on Facebook does something else:  normalize breastfeeding.  Shunning breastfeeding moms to “discreet” (read: obscure) corners of the internet does nothing to encourage accepting breastfeeding as a normal and beneficial piece of family life.  We have to stop communicating one thing (i.e. “breast is best”) and doing another (i.e “but I don’t want to see it“).

Facebook told the ABC 13 reporter that they are not against breastfeeding and that breastfeeding photos are permitted on the site.  In an email response to her inquiry regarding the deletion of The Leaky Boob they invited her to search the site stating she would see many breastfeeding materials pop up.  She did and yes, there were other groups and materials related to breastfeeding including photos.  They restated their terms of service regarding nudity, obscenity, hateful content, etc. and maintained that they are pro-breastfeeding.

Yet just as recently as yesterday another page was deleted for breastfeeding photos and another just a few days before that.  Several participants on The Leaky [email protected]@b have had photos removed and a warning issued that they posted a photo that violated the TOS.  There are at least 7 others that I know of that have had their accounts deactivated, 1 after posting just 1 breastfeeding photo within just the last week.  Historic Photos and Prints of Breastfeeding had a good chunk of their photos and art prints removed this week as well.  Personally I had 5 photos deleted and warnings issued last week and am surprised my account has not been deactivated.  This just a sampling and it continues to grow.   Groups and pages like Removed: The List, Stop Deleting Mother’s Support Groups F. B., Breastfeeding and Birth Pics that were deleted by bots, and more  dedicated to keeping tract of who was removed and petitioning to bring back users are being created almost as quickly as breastfeeding photos are being removed.

When these individuals and groups request information as to why they receive the same form email I did.  Upon appeal they receive yet another form email.  If they hear anything at all.  Facebook may claim to the media that they support breastfeeding and women but their actions and lack of communication with the users they’ve deactivated indicate something entirely different.  If it walks like a duck, talks like a duck, looks like a duck…

Hello Lysander,

Thank you for your personal response regarding the deactivation and request for reinstatement for The Leaky [email protected]@b page.  I genuinely appreciate your apology and having the page reinstated again.

As excited as we are to have The Leaky [email protected]@b back, the situation has not changed.  Any page, individual, or photo is at risk of being deleted when related to breast health.  Because of message size constraints, I will send the list of pages and profiles still deleted to you under separate cover.

Facebook has a responsibility to its customers to clearly communicate that they are pro-women by creating a new way to moderate materials flagged as obscene and providing protection for pages that register as breast health or breastfeeding related.

By reinstating The Leaky [email protected]@b page, twice, Facebook indicates that you are aware there is a significant problem with your current system and it appears this has been an ongoing problem since 2007.

I respect that you need a system to maintain a site free of inappropriate groups and pornographic images and I appreciate the efforts to keep Facebook safe.  However, when images, pages and user accounts are deleted it is nearly impossible for these to reinstated without the involvement of the media.  The lack of response for requests to appeal disabled accounts or at least to receive an explanation for the action communicates you do not support breastfeeding or breast health which means you do not support women.

Lysander, I know you are not personally responsible for this flaw with Facebook, however, you are the only person that has attempted to contact me personally.  I would appreciate your attention to the list of names and pages I’ve included that are currently deactivated for posting breastfeeding photos.

I would love to report in my next round of media interviews that Facebook has a solution to this problem, can you tell me how you plan to make this situation permanently better?  Also, when can the deleted pages/profiles expect to be reinstated?

Thank you for your time and quick response on this matter.

Sincerely,

Jessica Martin-Weber

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It’s Time for Facebook to Prove It’s Not Anti-Women

The Leaky [email protected]@b Facebook page was reinstated again this afternoon, January 5, 2011.  This time cautious celebrations were expressed on the page along with fear that it would just go back down.  As I write this it has been up for 7 hours, just about as long as it was up yesterday.  Hopefully it will really stay this time.

Our celebration is tempered a bit though, we’re missing a few of our members.  Several “Leakies” as we affectionately call those on the Facebook page, had their accounts disabled after receiving warnings for supposed obscene photos.  Just like TLB, they received the non-specific form letter via email informing them that they were deleted for violating the TOS. These individuals along with numerous other group and business pages have had their accounts deactivated all because someone decided that their breastfeeding photo or information was vulgar.

Judy P. Masucci, Ph.D, president and owner of A Mother’s Boutique shares how Facebook deactivating her account last summer impacted her.  Now she tip-toes around her pages on Facebook afraid to say or post anything that may attract unwanted attention.  What is she doing that is so obscene?  Sharing information and photos that support breastfeeding and mothering.  No lewd photos, no hateful content and certainly nothing as revealing as what you can find on the Playboy Facebook page.  (I can’t bring myself to link to the Playboy page but if you’re really curious do a Facebook search, you’ll see what I mean.)

As excited as we are to have The Leaky [email protected]@b back, the problem remains and any page, individual, or photo is at risk of being deleted when related to breast health.  Facebook has a responsibility to it’s customers to clearly communicate that they are pro-women by creating a new way to moderate materials flagged as obscene.  No doubt the company is overwhelmed with reports of obscenity but surely they are smart enough to develop a system that would allow them to remove the truly obscene materials while those related to breast health including breastfeeding and breast cancer are able to remain.  Additionally they need to have a provision for an exempt status for all groups, pages, and companies related to breast health.  If they don’t, well entrepreneurs, there’s a market here for you to create a new social media site that can do just that.  Facebook, your customers are unhappy and many of us are waiting to see what you decide to do now before we take our business elsewhere.  I appreciate your efforts to keep pornographic images off Facebook, I really do but please, breastfeeding is not pornographic.  Reinstating The Leaky [email protected]@b indicates that you are aware there is a significant problem with your current mode of operation.  The first media coverage I could find on this problem dates back to 2007.  You would think Facebook would get tired of this and make some necessary changes.  Four years is long enough, fix it.

Have you had your account deactivated and you suspect it is for breastfeeding photos?  If you or someone you know of, individual or group, has had their account or page deactivated please leave the information in the comments here.  If there is a page started to bring them back (as was Bring Back The Leaky Boob- again.) please share the link to that as well.  I am compiling a list to take to Facebook not only to ask for those pages and individuals to be reinstated but to show how flawed their current system is.  If The Leaky [email protected]@b could be deleted twice within a matter of days something is obviously not working.

Nobody should have to tip-toe around their pages afraid that educating and supporting breastfeeding or breast health could have them deleted.  Help us continue to hold Facebook accountable to it’s customers.

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