When I was young, so young that I don’t remember the exact age or grade level, my teachers taught me something that I’d hear probably 100s of time over my academic career. Stealing someone’s content, without permission is a serious crime. Even stealing one word or line of a work without attributing had serious academic repercussions  My journalism professors warned, speaking to the entire class, this type of behavior would lead to immediate expulsion.

I think we all have the message drilled into our heads. Do not steal content from others.

Apparently, the American Heart Association missed the message.

Plagiarism is illegal, unethical and not a victim-less crime.

The American Heart Association stole my work. Repeatedly. Even after I made them well aware.

They’ve harmed me on several levels. They’ve jeopardized my professional reputation.

A few notes before I outline this all. First, I’ve been absent here much longer than usual. I just want you to know I’m okay. I was a bit sick, but am feeling better. Honestly, I haven’t been pouring my heart into writing and advocacy work because after seeing my work stolen, the wind was taken out of my sails.

Second, this post will probably be much longer than anything I usually write. Please stick with me. Please help. I’ve been harmed by a mega-organization. I’ll need lots of help from you, other people like me that genuinely care about a cause and not the bottom line, to see that A. this doesn’t happen again. B. the American Heart Association does the right thing here and C. that other large organizations don’t think they can get away with stealing the work of bloggers.

Discovering the Stolen Content

In late April, I opened a monitoring service I use, to check for the latest articles about CCHD screening of newborns with pulse oximetry. If you’re new to my blog, this is a simple screening that might have found the heart defect that killed my daughter had she been screened. I’ve advocated for the screening and been vocal. In fact, I was able to successfully lobby for the first piece of legislation in the country here in my home state, Indiana.

I came across a letter to the editor submitted to a newspaper in Louisiana. I read the article and thought to myself, “Wow! That’s great, and exactly what I’ve been saying over and over!” I even posted it on Facebook, stating how right on it was. The work seemed familiar, but to be honest, I skim read it among 100s of other articles I looked at that day.

A few days later the same letter, with a different author and headline appeared in a different newspaper. This time, I read it closely and immediately knew why I agreed so much with the author. I was the author.

The submitted letter-to-the-editor. 

Letter to the editor appearing in the New Star April 24, 2013. Screenshot taken May 14, 2013.

My original content. 

My content posted July, 2012. Screenshot taken May, 2013.

Most of the content of these stolen letters was copied and pasted without any changes or attribution from my Baby Heart Screening Blog. Other sections were changed, little of the article was completely originally, except, of course, this at the end of the letter, “ I stand with the American Heart Association, that the routine exam is not enough.”

I’m the only author on that blog, and aside from cited cases of sharing others works with proper attribution, all of the content is written by me and automatically copyrighted. Interestingly, I did ask for a medical professional to review the post (and I of course mention that in the post) in question, so I have tons of emails back-and-forth of that post in drafts, proving I came up with the content last summer. That doesn’t really matter though, there is no question about it. The AHA stole my work. Numerous employees admitted stealing my work in emails I’ll share portions of later in this post.

I just happened to find this letter right before I was planning on going to sleep late in the evening. I didn’t sleep that night.

That early morning, I found my content stolen on two newspaper websites and one blog. I have a soft spot for bloggers and felt the blog might have been duped so emailed them directly, and we quickly came to an agreement. What I found interesting about that piece, is that it credited a quote I used directly from a research study to the doctor who signed on to the letter that was my plagiarized work. So in effect, the AHA plagiarized not only me but the authors of that study.

Don’t Be Confused, The AHA is Responsible

I knew right away who was responsible. The letters both ended differently than my original, with a big shout-out to the American Heart Association.

I’ve worked in non-profit public relations before so I knew it was common practice to write (or in this case steal) content about an issue that includes mention of your non-profit or makes your non-profit look good, find someone either influential in the community or with a strong tie to the issue, ask them to sign the letter and submit it to the newspaper. Makes all those heartfelt letters to the editor seem dirty huh?

That’s what happened. This letter was stolen by the American Heart Association and they then asked different people to attach their name.

Think I’m jumping to conclusions?

The AHA admitted doing so.

What follows is portions of an email from Mary Latham, assistant general counselor with the American Heart Association:

“We have carefully investigated the matter referenced in your letter dated April 29, 2013.  After review, we have confirmed your unsourced content regarding pulse-oximetry appeared in American Heart Association letters-to-the-editor.  We apologize for this error, and deeply regret that your content was not properly attributed.” -Mary Latham email to kbrite@gmail.com on May 1, 2013.

(See how I did that? Used only as much of the original work as needed to make my point and attributed it properly?)

AHA and Me, the Back Story

Back to that morning when I found the work, I immediately contacted the American Heart Association via social media. I even reached out to a local person asking for national contacts. I also did some digging into the people who signed their names and tried to contact them. I left messages with the signers that were never returned.

Eventually, I got the contact for the AHA’s legal counsel and wrote them a long letter outlining the stolen content, what has been in my opinion a pattern of this type of behavior and what I expected to remedy the situation.

Did you catch that? Pattern of behavior.

Up until this point, I’ve kept my feelings about the American Heart Association relatively private. Since this can of worms was opened, I won’t any longer. In my opinion, based on what I’ve observed, the AHA has conducted itself in an unprofessional and unethical way in regards to pulse oximetry screening advocacy.

CCHD screening has been parent-driven. I can’t take credit as the catalyst or most successful of all the wonderful parent advocates, but I created Pulse Ox Advocacy to share tools and advocacy tips.

I repeatedly attempted contact after meeting a national-level advocacy contact to see how parents and the AHA could work together. I was more-or-less brushed off.

In my opinion, the American Heart Association saw an opportunity to garner media mentions and goodwill by attaching to “cupcake bills.” These bills have little opposition and are saving babies. Even better, in my opinion  much of the ground work was already done by other people. I feel the American Heart Association jumped in, made it appear to the average reader they’d done a ton of work on the issue and spun this to something they could use to increase donations. In some states, I’ll content parent advocates have told me the AHA helped a lot. However, in others, parent advocates have reported and I’ve noticed the AHA took credit for the work done by others. Again, this accusation is my opinion. I’m not speaking for every parent’s experience, and can’t speak for this community as a whole. However, I can reasonably say based on what I’ve been told, I’m not the only one who has had a horrible experience working “alongside” the American Heart Association on CCHD screening advocacy.

This is a precarious situation because the AHA is so huge. I’d like to awknowledge that some of their employees are great at their jobs and a few of the pulse ox bills wouldn’t have passed without them in some states, to be fair, again all in my opinion.

Another reason I feel the AHA’s advocacy work with CCHD screening has been sneaky and underhanded is that I’ve been suspicious that the AHA staff members were following my work and the work of others and simply emulating it in marketing and advocacy efforts. I was extremely private with those feelings because I didn’t have proof. I even tried to “play nice” with the AHA repeatedly thinking that perhaps these incidences of taking credit for the work of others, of producing marketing content I felt heavily borrowed from materials created elsewhere and making advocacy choices I didn’t support in some states could be chalked up to coincidence or mistake.

Here in Indiana, the American Heart Association as an organization wasn’t even supporting standard pulse ox screening for all newborns when I worked to get a bill introduced and worked that bill into what eventually became law.  I’ve been told on other issues, the AHA local offices couldn’t advocate for something that wasn’t supported at the national level, so if that is to be believed, they not only didn’t help, they couldn’t help. Imagine my surprise when in February, 2012 I stumbled upon a fundraising article listing all of the wonderful things AHA has done. More or less a puff piece to get readers to donate or otherwise the AHA (again in my opinion). In that article, guess what was listed as an accomplishment? Yup. CCHD screening. Cora’s Law.

I left a comment asking for a correction of the false information and before I knew it was on the phone with someone from the Indiana office reporting “the entire office was upset at the comment.” I quickly set her straight. I was quite more than upset. How dare the AHA use my work to try to get donations for their organization? You might be thinking, wouldn’t I want to help out the cause? I feel the AHA isn’t a good steward of donations, so no, I don’t want to fundraise for them, and I don’t want them to use my work and words to further their agenda.

Then the obvious case of plagiarism landed in my inbox. I suddenly felt less off base for my previous suspicious.

After about a week, the same attorney for the AHA quoted above emailed me with the “results of their investigation.” The work was stolen. Apparently someone in an office in another state lifted the content for an internal education document (what else of mine or others is floating around the AHA right now) and another person in another state submitted as letters to the editor not knowing the content had been stolen from me.

All along, I’ve posted a few status updates about the entire situation on Facebook, but was careful.

I wanted this to be resolved to my satisfaction behind closed doors because I didn’t want to sink negativity into my social networks and websites.

I’m also quite mindful that some people in my community, the congenital heart defects community, support the American Heart Association. They fundraise for the organization or go to the heart balls. They love the staff at their local office. I didn’t want my friends in that position to feel awkward or caught in the middle.

So I stopped to think about where to go next after getting the email with the AHA’s proposed remedy (what amounted to in my eyes as I’m sorry, we’ll work to take it down, we’re making changes so it doesn’t happen again).

Honestly, I held back for another reason as well. I’m internally seeing the best in people and have trouble thinking anyone, much less a large nonprofit organization, wouldn’t step up and work to do the right thing. I thought they’d be mortified and work around-the-clock to get the letters pulled and to make sure I felt the damage done to me had been sufficiently repaired.

As I mentioned, I wasn’t satisfied, mainly because I don’t think the AHA is accepting full culpability. From the email, they act like it was fine to circulate the content internally, it wasn’t. They just don’t get it.

From the email from Mary Latham:

“An AHA employee based in Florida collected information on pulse-oximetry from various sources as background information on the issue.  The text of your blog post was included in these materials.  The employee passed this information to a second employee who prepared a letter-to-the-editor.  Since the content was not labeled otherwise, the second employee incorrectly assumed all the resource information was AHA content.”

I have no idea what else is circulating internally within the AHA, unsourced. It’s not okay to lift all of my information, even for “background information” without including attribution. It’s highly unethical to me to take all of my work, or all of the work of others, use it as inspiration and not cite it or recognize the others working on this issue whom you’ve emulated.

Then today, it happened again. I found another letter-to-the-editor, signed by someone else with the same lifted content published just two days ago, or six days after the AHA’s assurances it wouldn’t happen again.

I still value my friend’s opinions who support the organization. However, plagiarism is serious. Repeated plagiarism when the organization is fully aware the content was lifted and has promised to not to it again is something I can’t keep to myself.

Ask yourself, if they stole my content, what else have they taken? Is that the sort of organization you trust?

This is something that donors, board members, volunteers, staff members and the general public need to know.

A major nonprofit organization plagiarized  and they think getting a small correction in the newspaper and weak attempts (I think I am safe in calling them weak attempts because it happened again) at stopping future plagiarism are enough.

I didn’t ask for that much. In my original letter, I ask for the following, nothing really of personal gain:

“Written apology from AHA national office and the Louisiana local office (can be delivered via email). In addition, apologies from the two people whose names were attached to the articles, so I know they are aware and acknowledge the plagiarism…A financial settlement. AHA obviously benefited much from stealing my work. AHA should be willing to share the financial benefit it received from my work, so that it serves the purposes for which I have worked so hard. We can discuss the specifics, but I envision a substantial grant or donation to (a nonprofit I’m redacting for now) to help sustain my work with pulse ox screening, and would be open to other suggestions along those lines. A letter from the AHA acknowledging the work the CCHD parental community has done to get pulse ox screening endorsed by AHA, passed legislatively and accepted by a large part of the medical community. This needs to be released publicly as soon as possible.”

But, It’s for a Good Cause

Folks are funny when it comes to stealing graphics and words. I think many people view it as a victim-less crime (in many states and jurisdictions plagiarism is indeed a crime, a misdemeanor). What’s the harm in taking a few paragraphs of someone’s work?

From my experience, that thought pattern is especially true when it comes to a nonprofit or cause stealing something.

First of all, even when it’s for a good cause, it’s not okay. Would it be okay for XYZ nonprofit to steal $5 out of my checkbook “for the cause?” Obviously, this isn’t the same. But, would it be okay for XYZ nonprofit to take a chair from my front porch because they needed it and thought it would really help the cause? It’s much clearer when we’re talking about taking physical things. It is a different kind of theft, of course, but it is never okay for anyone to plagiarize for any reason, ever.

This particular case gets even more nuanced. Honestly, if a fellow advocacy blogger had stolen my words or images (as has happened), I wouldn’t be writing this. It wouldn’t be okay. I’d still go through all the hoops to get the situation remedied. I outlined just some of the reasons I’m not a supporter of the AHA above.

AHA employees are paid, and arguably well. According to filings on Guide Star, their president makes over $600,000 a year. I do believe in fair pay for nonprofit employees, however I am not paid. I do all of this because I am driven to do so. I believe the AHA largely doesn’t share my motives.

In short, I don’t feel the AHA is a good cause. Sure, some of their individual employees have done great work. Some of their grants have funding important research. I support some aspects of what the organization does, but not the organization.

People need to know about this plagiarism.

Donors deserve to know when an organization they support or might potentially support has done something of this magnitude.

What I Need From You

The decision to write about this, something so negative, on the blog I write in memory of daughter was something that I took time to reach.

However, I came to the conclusion that people need to know.

Plagiarism is a big deal. Plagiarism by one of the most well-known nonprofits in the nation is in the public’s interest. You needed to know.

I’m asking you to share this post on your social networks. People need to know.

If you’re so moved, I’m asking you to share your feelings about the American Heart Association’s behavior on their Facebook or Twitter accounts.

Known Plagiarized Content

Plagiarized letter on Times Picaynne website, posted April 22, 2013, still online as of May 13, 2013.

Plagiarized letter on The News Star website, posted April 24, 2013, still online as of May 13, 2012.

New Orleans Moms Blog (the updated post seems to have been deleted entirely, and the bloggers answered my email immediately and made changes within minutes).

Plagiarized letter on The Ouachita Citizen, posted May 2, 2013.

Plagiarized letter on The Daily Comet, posted May 13, 2013.

…

Post edited for clarity and typos May 15, 2013 10:30 p.m.

 Update: Late last night, the American Heart Association on their Facebook:

“We made a mistake, and we are sorry. Content from blogger Kristine Brite McCormick, a pulse-oximetry advocate, appeared unsourced in several of our letters-to-the-editor. Please know we’ve already reached out to the newspapers to run corrections and are hoping those will print soon. In the meantime, we would like to publicly apologize to Kristine and will continue to try to work with her to make amends.”

My response:

I acknowledge the American Heart Association’s apology and do recognize that the AHA reacted relatively quickly after my blog post was published (weeks after knowing about the incident). I look forward to continuing discussions about how we all, AHA included, can work together for people born with a congenital heart defect. I hope this discussion results in even more advocacy for CCHD screening with pulse oximetry by the AHA, with parents leading the movement. I hope these changes are quick so the focus can return where it belongs, on doing what is best for babies born with undiagnosed heart defects. I think the public, including AHA donors and supporters, have a right to know the entire story, which I outline in my blog post. It is my hope this chain of incidents brings sweeping and well thought-out change to the organization, and that the congenital heart community is included in those changes.

…

The feedback from this post has been overwhelming. I’ve heard from many people who sadly had similar stories to tell. I’ve heard from many people who were frustrated with the AHA for other reasons. What has been most interesting has been hearing from others who are frustrated in general with large nonprofit corporations. That’s a conversation I do plan on facilitating soon.

As I mentioned, this blog post was something I thought about for a long time, after giving the AHA time to do the right thing.

The apology was a start. A pattern I see developing from AHA communications to me and publicly is that they seem to think they get to decide what makes for appropriate remedy in this situation. I clearly outline extremely reasonable remedy guidelines to the AHA. As the person impacted, I think it’s reasonable for the AHA to listen to me.

While most feedback has been wonderful, some AHA supporters have a different perspective. All of this feedback has been on the AHA Facebook page from what seem to be AHA supporters. I understand to an AHA supporter with no back story, standing up for your organization might come as an immediate response. I acknowledge not everyone will get it. In this day of copy-and-paste and the share button, plagiarism isn’t a huge issue to some.

I think back to my pregnancy a lot. I was so excited and happy. I wanted everything to be perfect for her. My definition of perfect back then is different than my definition would be for a future baby. I thought about her nursery and planned every little detail, with such love and care.

I’m so glad I have those good memories and time with her kicking up a storm in my belly.

I’m also glad I took a lot of pictures of my preparations, and wanted to reminisce with you all here, telling the story behind the picture.

My mom and I painted these letters for Cora when I was pregnant. We were really lucky because my mom lived next door when I was pregnant, during Cora’s short life and until we moved back to Indianapolis about six months after Cora died. I have vivid memories of painting these letters with my mom and was proud when I saw the finished product. Oh, and if you paint letters like this, don’t put them on newspaper to dry! The newspaper stuck to the back where paint had dripped over. I peeled most of it off, and of course you can’t the newspaper when they’re on the wall. I haven’t been able to part with the letters and have them tucked away.

I spent hours organizing Cora’s closet. I put organized everything by size and gave Ben tutorials how it worked a million times. I can still remember the feeling of placing the little clothes on the little hangers. She had so many clothes, this is is just one half of the closet! Of course the first time he changed her by himself, he pulled out the nearest onesie, which happened to be size 12 months. I laughed so hard when I woke up to find little Cora swimming in a huge onesie and Ben none the wiser. Next time, I’ll only box up the clothes that are larger because Ben seems incapable of getting baby sizes.

I was so happy the night Ben put the crib together. It was so magical.

Of course since I was pregnant I fell asleep before he finished. This is Ben showing me the finished product, with help from Reggie, the next morning. I had my little heart set on finding a cherry wood-colored crib.

We budgeted carefully with Cora, and really got creative to find everything I wanted for her. I made the stocking for her before she came. For Christmas, we got her a couple of things. I saw this dolly and had to have it. Was totally obsessed. I snuck it in the cart when Ben wasn’t looking because he said she had enough stuff for Christmas considering she’d be less than a month old! Of course when I got it home and hug it with a big grin, he didn’t mind. I knew my baby would have blonde hair so wanted this, and sure enough she did.

Some pictures of Cora’s nursery finished. I loved the cherry blossom decal and remember putting it up with Ben.

My sister Megan sewed the curtains for us.

I loved walking into that room the months before her arrival. Sometimes I would sit in there. My husband refinished the rocking chair himself.

I remember walking in there a few days after she died and just bawling and wailing in that rocking chair.

After Cora’s death and before her funeral, we felt this need to keep up the pace of furiously preparing for her. We carefully prepared everything for the funeral. We even gave her eulogy ourselves. We found this Christmas tree to hang some of her ornaments and bought it for the funeral. Here it is all set up in our home that first Christmas after she died.

This is a difficult post to write. One I’ve avoided writing for three years, for the reason I’ll dive into deeper below.

I often get asked what Cora’s exact CHD was. I get search engine terms asking that exact question.

I get why people are curious. It’s a common question in the CHD world, a way to relate to each other. Something people are curious about, however I have kept fairly quiet publicly because it is an extremely sore subject. One that needs a long explanation. One that I’m not sure people will understand.

About a month ago, I started a little private Facebook group for other moms who lost a baby to an undiagnosed CHD. It’s been extremely helpful and healing to have a little place to talk to moms that get it. I’m also extremely sad there are so many of us. My OB once told me I’d never find another baby whom this happened to. I’m really sad she was wrong. There are way too many of us.

The brave ladies in this group helped me feel better about this entire issue. See when a baby dies, the answers aren’t always clear. The baby’s heart is no longer beating, and it seems coroners aren’t always concerned with naming the defect, they just can see something is obviously wrong with the heart. Something that was structurally wrong since before the baby was born.  We know for absolute fact she died of a congenital heart defect.

To answer the question of Cora’s defect, I have to delve into the autopsy report and explain it, and frankly talking about my daughter’s autopsy report is not easy. Opening myself up to questions about it from any and every one is even harder. Also, it really doesn’t matter.

Even thinking of the autopsy causes me much pain. I’ll never forget opening that envelope and reading about the toe tag on my baby’s toe. The day I got it, I was sent into a spiral of sadness and pain like nothing I’ve ever experienced. 

The day I opened to mailbox to find this will always stand as one of the worst days of my life. Yes, officially she lived 6 days. I always say 5 days because she was born late at night and died early in the morning. I didn’t get a full sixth day with her.

I’ll talk about it here as much as I’m able. I hope that this will stop the questions. Unfortunately, when it comes to undiagnosed CHD, please be gentle with the families and consider the pain of talking about their child’s autopsy report.

In a nutshell because I just can’t go into it all the way, Cora’s autopsy describes her heart, describes her pulmonary veins and that they were defected (that’s why she bled that night, another question people ask that causes pain). Your pulmonary veins connect your heart to your lungs, and because Cora’s were defected since birth, the blood didn’t flow properly. The report names her cause of death as congenital heart disease. Sometimes when I’ve been questioned, I’ve even considered posting the autopsy as proof for all to see. Yes, people have the audacity to create a conspiracy theory of the fact I haven’t been able to talk about this. But, I’m not going to. That autopsy report isn’t for the world to see. It’s too painful for me as her mother. It’s too morbid and graphic.

When the coroner called a few days after her death with the preliminary results, and I first heard the phrase congenital heart disease, she said Cora’s “little heart was a total mess.” That says it all. Her heart was broken.

Cora had a broken heart. That breaks my heart every day. For a long time, I wanted to know exactly what happened. I sent the autopsy out to numerous experts in the field, and they named what they thought the defect was. I’m sure what it was, and it is a critical congenital heart defect (which could be found by pulse ox) but I’m not going to name it here and now in this post.

I want to keep it as “congenital heart disease.” I think it’s also nice because sometimes in this community, we got caught up in who has this defect or that and what’s worse and what’s better. I like the idea of uniting. Cora had congenital heart defects and now she’s saving other babies with congenital heart defects. That’s all we need to know.

I hope you’ll respect and understand the pain this causes me, and why I don’t want to talk about it. It’s only because of all the other brave mamas who have faced similar reports to me, naming CHD, describing the heart, but not naming the defect, that I’m able to share this all. I want this community to understand that CHD diagnosis by the coroner can be very different than CHD diagnosis by a cardiologist, and we need some breathing room.

Thank you for all the messages and comments in response to my “The I Word” post where I write about some possibly fertility issues.

I’ve read over and over from woman in the infertile community about the hurtful comments, some obviously hurtful and others more nuanced for years. So it didn’t come as a surprise that while 90 percent of the feedback was awesome and wonderful, some if it was quite hurtful. I knew that might happen when I published the post.

At one point, I swore up and down to myself that I’d never write about anything personal again. But, my hot-headed self calmed down and I’ve been able to shake off the anger, bitterness and sadness that came after some of the communication I received.

I know now why many infertile bloggers are anonymous and why so many other woman suffer in silence. ‘Tis not easy to be public about this.

I’d like to remind you that this blog is in no way shape or form meant as medical advice. It’s not even really a health care blog, besides my postings about newborn health. It’s my personal space where I write my heart out, both to feel less alone myself and to make you feel less alone if you’re dealing with loss, infertility or anything else I write about. I think you’re all smart enough to realize that. I don’t share every single risk that comes with my personal health care decisions. I’m definitely not saying I’ve made the best decisions, I always haven’t.

Please, just don’t be a jerk.

At this point, I’m fine with reading about alternative therapies, how X, Y, or Z worked for your second cousin and anything you want to send my way. I know how to ignore what doesn’t pertain to my situation, and have learned much from many of you about this. I know that bothers some infertile woman, and maybe if I get to the point where I’ve tried everything under the sun twice, I’ll get there too.

Again, thank you so much for taking the time to reach out to me. I hope this post doesn’t scare you away from doing so.

But, this is part of the journey. This sort of feedback is exactly why woman suffer in silence, feel isolated and feel weird talking about it.

I considered not writing this, in light of the horrible tragedy in Boston. But I am writing it for the 8000+ newborns that will die globally today, most of them of something we have the capabilities to prevent.

Today was day one of the Global Newborn Health Conference I wrote about earlier this month. 

I’m not an expert, obviously, and was in awe listening live to the stream of the conference at the brilliant minds that have come together to put newborn health on the global public health agenda. Rather than try my novice hand at interpretating everything I’ve heard, I’ve created some images to share what I found most striking from today’s conference.

For more details, follow #Newborn2013 on Twitter. Check out Mom Bloggers for Social Good.

Newborn health is now a priority. As a mother that lost a newborn, I’m comforted knowing that thousands of people are working to making sure more babies live to become adults.

When I was younger, I often worried I’d struggle with fertility issues. My worries were founded on some personal issues, family history and just having a worrying personality.

So when I got pregnant with Cora without even trying (surprise!), I was not only excited to be a mom, I was also relieved.

Looks like I haven’t dodged the bullet yet.

I won’t share all the intimate details with the Internetz, but I think infertility after loss is an important topic, so I’m opening up about it. And whew, I just typed it. Infertility. That horrible I word.

I haven’t been given an official infertility diagnosis, but I have been diagnosed with polycystic ovarian syndrome. I’ve suspected I had PCOS for a long time, but just recently got the diagnosis. I was in many ways relieved. I faced up to my fear, got the diagnosis and now can work on getting treatment. Well, I’ve more or less gotten the diagnosis. An ultrasound revealed multiple cysts on both ovaries. I also have many of the symptoms. In the past, doctors told me they suspected, but I never went through with the ultrasounds, too afraid. I’m glad I’m facing up to it. Now it’s manageable.

It’s too early to know what the treatment plan in is.

I haven’t been trying to conceive for the past three years seriously (charting, drugs and etc), so I feel like an infertility poser. We’re not there yet, but we’re dangerously close.

Hopefully some weight loss, Metformin and watching what types of foods I eat will help my find the balance that leads to a healthier me AND a knocked up me.

I’ve been counting calories closely for the past two weeks, and can tell I’ve lost some weight. When I got pregnant with Cora, I’d just lost 20 pounds, so I think that weight loss might be enough to kick my body into egg making mode (if you aren’t familiar with PCOS, one of the common ailments is non-ovulating cycles).

The good news is there are a lot of effective drugs that can make you ovulate.

Since I’m not a PCOS expert, I won’t even try to explain it all to you, but if you’re interested in learning more, there’s lot of information online. It’s a fairly common issue. Here’s a link to PCOS info from the National Library of Medicine. 

If I’m up to it, I’ll share a bit of what comes next here. It’s of course a pretty private topic, but as always one of my goals with this blog has been to help others and to make women feel less alone. My next step is to call my doctor on Monday and to get in for a treatment plan. I’m going to push for Metformin and of course guidance with an eating plan. After I lose a bit of weight, then I’ll *gulp* bring up the “I word” to my doctor.

xoxo

A (maybe) infertile me

I need you to know that because I talk about her all the time, doesn’t mean I’m “obsessed” or “stuck.” She’s my child it’s normal.

You don’t have to put on a frown every time I talk about her, quickly change the subject or nod awkwardly. We can talk about her and let her brief life weave into our current life. She made a lasting impression.

I need you to know it’s okay for you to talk about her. I like it. It makes me smile.

I need you to know that talking about her doesn’t mean I’m always sad. I’m actually much happier overall because she was in my life.

Please don’t judge how well I’m doing on how much I talk about her. Don’t take it as a sign I’m not “recovering” from my grief.

I need you to know this isn’t some sort of phase I’ll grow out of.

I need you to know that talking about my baby, writing about her, thinking about her is all very normal. Yes even three years after her death. Don’t you think and talk about your children every day?

I need you to know that judging me is cruel. Let me do things at my pace. Unless I’m obviously harming myself or others, keep it to yourself. No, don’t “vent” to a mutual friend. Do you have nothing better to do than gossip about how a mother remembers her child.

I need you to know.

As I do the dishes, I think about the 3.5 year old I should have weaving in and out between my legs.

On the holidays, I can almost picture her opening her gifts, mouth open at the magic we created for her with traditions and new experiences.

When I sleep in, I often think, “If she were here, I wouldn’t be sleeping this late.” I wish I never got to sleep in.

When the dogs yap incessantly during the afternoon, I think of how I should be upset they were interrupting her nap.

As I cuddle up to go to sleep, I almost imagine her tip-toeing in to our bed.

I mainly think of those magical moments, seeing her first and seeing a whole new world through her eyes.

Nothing goes by without feeling her absence.

However, her presence is always here as well.

I feel so close to her when advocating for other babies.

I feel her most when I speak about her. Perhaps because I’m a nervous public speaker. I slow my breath and talk to her in my mind. She walks to the podium with me.

I don’t dwell on her death. I remember her life and in those sharp moments of absence, I’m comforted also by her presence.

My world is completely new. I see this new world not only through her absence, but also through her presence.

Each year, 3 million newborns die.

In 2009, my newborn was one of them.

It makes me physically ill to think that not only was she not alone, she was one of an estimated 3 million newborns to die that year.

Three million mothers losing their newborn each and every ,day.

I’m not the best with math, but my quick calculations, that’s 8,219 newborns dying each and every day. Almost the size of the town where Cora was born being wiped out before they even get a chance. 342 babies every hour. Five babies every single minute. As I type this sentence, a mother is losing her baby, somewhere. I wish I could give her a big hug.

Instead, I’ve decided to dedicate my life, and Cora’s short life, to making it happen less. You’ve read a lot on this blog about congenital heart defects, the top killer of infants from birth defects, and I’ll always work to spread the word about CHD and how we can save babies with broken hearts.

But, whatever the cause, where ever the baby and mother, I want it to stop.

Did you know that mothers in Ethopia don’t even name their newborns for the first month because death at that age is so common there?

Can you imagine?

Really. I know you don’t want to imagine. Who logs onto the Internet and wants to read about babies dying?

I’m glad that you’re taking the time to read this because until we all face up to the issue, it won’t change. We have to talk about it. As painful and awful as it is.

Later this month, a group of public health officials, doctors, nurses, parent advocates and others will come together to talk about what’s work, brainstorm new solutions and improve the health of newborns.

The Global Newborn Health Conference kicks off April 15 in South Africa. The conference is supported by Save the Children. MCHIP, Gates Foundation, USAID and UNICEF.

As part of my work with the Global Team of 200, I’m writing this post. I’m taking it one step further.

April will be “Newborn Health Month” on this blog.

Please share what I have to say.

These are our babies. Our most important resource. If we can’t save them from preventable death, no matter where they are born, what does that say about us as a society?

I ask you to take one tiny baby step today to help spread the word about the crisis newborns around the globe are facing, and to help save tiny lives.

Please help by:

1. Sharing this post.

2. Following the #Newborn2013 hash tag on Twitter and RTing what you learn.

3. Not shying away from my posts this month. Please, please stay with me.

Pulse oximetry screening cost under $10.

If Cora had been screened with pulse oximetry screening, she might be a live today. I might not have found out about her congenital heart defect from the coroner. 

We’ll never know for sure if her oxygen saturation would have been low. We weren’t given that opportunity.

We’ll never know if Cora would have thrived despite her CHD.

She never had a chance.

Because she wasn’t given a $10 screening.

I’m glad it’s being done on Indiana babies because of her. 

I’m glad babies are living because of the $10 screening.

I just wish she’d been given the opportunity.

Her life was priceless. Worth so much more than $10.

“Cora” butterfly by Carly Marie Dudley

Newborns shouldn’t die.

Ever.

Especially because they weren’t given a $10 screening.