CHD Week: Cora’s Story

Today I want to talk about a little baby named Cora, and what she’s doing for babies all over the country who haven’t been born yet.

When Cora was born, she was perfect. She had a great Apgar, a mom and dad and extended family who adored her. By all indications, she was a perfectly healthy baby. But on Dec. 6th, 2009, Cora died while breastfeeding. She was only 5 days old. The coroner determined that Cora died from an undiagnosed congenital heart disease (CHD).

It was after this tragedy that I met Cora’s mother, Kristine, on Twitter and I’m proud to count her a friend. I’m in awe of Kristine. She has channeled her pain into creating the organization Cora’s Story. Cora’s Story lobbies for pulse oximetry tests to become standard for every child. They are a quick, inexpensive test that checks a baby’s oxygen levels, which can detect a CHD. Even if the pulse ox is not standard in your state, you can (and should) still ask for the test to be performed on your child between 24-48 hours after birth. I had never even heard of this test before talking with Kristine.

Why am I telling Cora’s story to all of you now? This week is Congenital Heart Disease Week. Did you know that CHD is the #1 killer of babies? Here are some other CHD facts you might not know:
– Between 1 in 70 and 1 in 100 babies are born with a CHD of some kind.
– This makes it the more prevalent birth defect.
– Many CHDs can NOT be detected on the 20 wk ultrasound.
– There are over 30 kinds of CHDs (also called congenital heart defects) known, though not all of them can be detected with any of the various types of equipment currently available.

So, what are some things that you can do to help?
– Tell everyone expecting mom you know to request a pulse ox test for her newborn!
– Blog about CHD Week and link up your blog post on Kristine’s website.
– Add a CHD awareness button to your blog.
– Check out Baby Dickey’s website for a list of other ideas (and a giveaway).
– Become a fan of Cora’s Story on Facebook.
– Send a free e-card from Punchbowl! For every card sent during the month of Feb., they’ll donate to the Children’s Heart Foundation.

The more awareness we raise, the more babies we can save!

An Open Letter to Medical Professionals

An Open Letter to Medical Professionals:

The physician/patient relationship is a complicated one. I realize this. And in the United States, there aren’t a lot of rules for decorum. So, because I like you (or at least some of you), I’m going to give you a few pointers today of things you probably shouldn’t say to patients.

For starters, you should never tell a patient of the opposite sex that s/he has a nice figure. That’s just icky. Then we start wondering how you’re imagining said figure. Along those lines, you shouldn’t be so bold as to say something like “WOW! You look so, SO much better when you’re straight!” to a person with scoliosis. I promise: the patient will begin to doubt your years of education. I’m pretty sure that most young children could identify the better-looking option. If that’s all your 8+ years at fancy schools taught you, we’re in trouble.

Never utter the phrase “Oh, I know just how you feel.” The one exception to this? If you are the patient’s long-lost identical twin, because we’ve all heard those Discovery Channel shows about the separated-at-birth-twins who led basically identical lives. In fact, if you are my long-lost twin, I’m liable to forgive your misguided attempt at empathy anyway.

And while there’s something to be said for a medical professional who gets excited by her job, as a patient it’s a little disconcerting to hear, “Yah, all of us were just in the back looking at your x-rays. We’ve never seen anything like it!” Sorry, it just doesn’t inspire confidence.

That said, patients usually don’t mind if you’re honest and tell us when you don’t know the answer. We’d rather you be up front then pretend to be an All Knowing Medical God, ‘cause we can totally see through that routine, even though we didn’t go to 8+ years of school for that.

Moral of the story? Use some common sense. And if you’re short on that, just give me a ring and I’ll tell you what to say. My rates are reasonable, I promise!

Best,
Maya, the Marfan Mom

2009 in Review

It’s been a busy year in our household! Here are a few of the highlights:

January: I had just graduated from graduate school and was enjoying doing nothing but being pregnant. About halfway through the month I learned my delivery plans were going to change pretty drastically. My grandfather passed away after a long battle with cancer; his funeral happened while I prepped for my c-section.

February: At the beginning of the month we welcomed Menininho. It was a complicated post-delivery, one that I hope to never repeat. We moved to California and I made my first silly new mom mistake.

March: I learned of the losses of two Marfan friends. Menininho was blessed and formally given a name. Our family came to visit. Mark was diagnosed with Type 1 diabetes.

April: A pretty boring month, but I did blog about some of my baby “must haves”.

May: We started using cloth diapers and won’t go back! Mark officially graduated with his MS. I also had the stress test that started a chain of events.

June: Mark and I celebrated our 2 year wedding anniversary. I also started a series of posts about my life with Marfan.

July: My Life With Marfan posts continued and I prepared for the annual National Marfan Foundation conference.

August: Menininho and I flew solo to visit my mom and sister. I finished up the series and went to my 4th conference, where besides working with the teens I was also one of the closing speakers.

September: My cardiologist discovered a problem with my heart and I decided to wean Menininho early in order to start a new medication. A few weeks later Mark was diagnosed with Celiac disease.

October: We had a mishap at the pumpkin patch, and then better success. I moved my blog from Blogger to WordPress.

November: I relived some childhood memories with MamaKat’s Writers’ Workshop and we got to spend Thanksgiving in Ohio, seeing all of my and Mark’s extended families.

December: The inner breastfeeding advocate in me wrote a post about a woman’s right to breastfeed and the inner patient advocate in me wrote a post about being an empowered patient. We bought a tree, spent too much time in the ER and had a failed Christmas tradition.

I want to thank all of you who read my blog, who give me feedback. I am humbled that you take time from your day to read what I have to write. I look forward to getting to know more of you and your writings in 2010!

~ Maya

The Breastfeeding Doll

This article topic comes by way of Her Bad Mother, posting at the Bad Moms Club blog.

HBM writes about a doll (not sold in the U.S.) called Bebe Gloten. She’s much more articulate than I could be, so I urge you to read her original article. Anyway, this doll is electronic, not unlike many of the dolls in the U.S., and it comes with a halter for the child to wear. This halter shirt has two flowers over where the child’s nipples are, and the baby “nurses” from those flowers.

The Huffington Post made a snarky comment about said doll, basically saying girls shouldn’t play breastfeed unless they’re old enough to breastfeed and that this doll is inappropriate.

My first thought was that having a doll dedicated to being breastfed, one that sucked on FLOWERS, was kind of weird. It was the flowers that got me, I don’t know why (maybe the idea of a breastfeeding prop?). But then I realized a breastfeeding baby doll is no more weird than the baby dolls that come with bottles: that is to say, not weird at all.

Children play pretend based on what they know. It’s natural for children who observe their mothers breastfeeding to play breastfeed their “babies”, just as children who see their parents “wearing” their babies may also want to wear their dolls, or children who go grocery shopping want to have a little play cart of their own. Playing pretend is how children learn about their world. In fact, my mother told me last night how I “breastfed” all of my dolls when I was little.

I do NOT disparage women who formula feed. I do myself. But I believe that women should be afforded every opportunity to breastfeed by receiving correct information and support so that they feel the choice to breastfeed is more open to them. And it frustrates me that people would find a doll that breastfeeds to be inappropriate or sexual, because breastfeeding is neither of those. Why not encourage girls from a young age that breastfeeding is great and normal? I doubt that bottle “feeding” a doll discourages girls from breastfeeding later in life, but my hypothesis is that girls who “breastfeed” their dolls are more likely to breastfeed, or at least attempt to breastfeed, when they have their own children.

So no, I won’t have an issue if Menininho nurses dolls (it’s not just girls who play pretend, after all!).

I’ll be proud.

Breastfeeding: Targeted

In case you haven’t heard, Twitter has been abuzz this week with the story of a woman and her family removed from a Michigan Target store because the woman was breastfeeding. Basically, Mrs. Martinez was nursing her baby in the electronics section, which was (according to her) not crowded at the time. An employee informed her that it was illegal to nurse in the store. Her husband, a police officer, explained this was not the case (in Michigan it’s legal to nurse anywhere that it’s legal for a woman to be). The police were called, the family escorted from the store. Target has since reiterated that breastfeeding is allowed in their stores.

At first, this is frustrating to me because it seems really over the top. Calling the police? I mean, c’mon! Employees need to be briefed better on breastfeeding policy, or at least be a little gentler with customers. You aren’t going to earn repeat customers by throwing out a family for doing something that didn’t even bring about any complaints from other customers.

But at second glace, I have been blown over by the really angry, disgusted comments from people over this story. They weren’t geared towards Target; they were aimed at the MOTHER. This has really struck a nerve of mine, so I want to take a minute to comment back on some of the themes I observed.

1) The woman should have just covered up. No one wants to see breasts.
This makes the interesting assumption that the mother WASN’T covered up. The article doesn’t say either way. Why do women automatically assume that a breastfeeding woman is “flaunting” her breasts or the act of breastfeeding? I’m not going to get into the debate about whether women should cover up or not cover up when nursing their children, but in all the women I’ve known who have breastfed or whom I have seen breastfeeding, none of them ever tried to make a big deal out of the act. In fact, they all tried to be discreet, whether that was using a nursing cover like a Hooter Hider or just slipping their child’s head under their shirt. I also think using a nursing cover is less discreet because it screams HEY EVERYONE I AM NURSING A BABY UNDER HERE!
2) The woman should have nursed in a bathroom, her car, or used a bottle.
Um, do you know what happens in a bathroom? Would you want to take your lunch, sit down on a toilet, and eat with all those smells, sounds, and germs? No? Then why should my child? I’ve nursed in a car frequently, but only when it was warm and convenient (I never left a store mid-trip to go nurse in the car). In Mrs. Martinez’s case, this was Michigan in November…never mind the hassle: it’s COLD out there! I had a couple issues with people being uncomfortable with my (covered) breastfeeding during the time I nursed Menininho, but the worst was this summer, when I was COVERED in my CAR. The man who pulled up in the car next to me was so…interested…that I actually felt threatened. Had my mother not been with me to drive us to another part of the parking lot I would have called security. And bottles definitely have their place, and if people prefer to use them, great! I had times where I pumped, particularly if I was going to be eating at a restaurant when my son would be hungry. But, bottles and breastfeeding aren’t the same and some babies don’t take even bottles. No woman should feel forced to bottle feed.
3) Breastfeeding makes other people uncomfortable, so it shouldn’t be done in public.
I have a couple of responses to this. First, people in the US (breastfeeding is not as controversial in other countries) are never going get over having issues with breastfeeding if we all go hide in the bathroom. Breastfeeding moms need to be willing to stand up for their rights, be visible, and show the world that breastfeeding is not gross or shameful. I’m not saying we all need to go topless or make a big deal out of it, but we need to be comfortable enough to breastfeed wherever is comfortable for us and our child, whether that’s in your car, on the bench outside Macy’s, or using a sling to nurse while walking through the grocery store. Second, being uncomfortable is part of life. Hate to break it to you, but the world is not always going to acquiesce just because you don’t like something. People who use crass language, pick their nose in public, smell like cigarette smoke, or dress like hookers make me uncomfortable, but unless it’s extremely out of hand I don’t say anything because other people have the right to exist. Which brings me to my last point: if you don’t like to see a woman nursing her baby, LOOK AWAY.
4) Think of the children. They shouldn’t have to see this/their parents shouldn’t have to explain this to them before they’re ready.
I gotta be honest: I don’t really get this one. I would imagine not too many kids would even notice this taking place for one, and if they did ask about it, not require a long explanation. “That woman is feeding her baby,” should suffice, with “breasts are for making milk to feed babies” for the really inquisitive. I don’t see either of those statements as being controversial or scarring. And, are the same parents upset that their child might see a flash of breast from nursing also removing any actual sexual images from their child’s view? It doesn’t make sense to me that breastfeeding would be inappropriate but Lara Croft, the Victoria’s Secret fashion show, or any of the many over-sexualized women in movies would be totally ok viewing.

Anyway, that’s my two cents. I welcome any discussion in the comments, but PLEASE keep it respectful.

And, don’t forget to enter my Little Ones giveaway!

Neighborly Love?

I want to know what is wrong with people.

Are we so connected online that we’ve stopped connecting in person?

Is our “Me” culture so pervasive that we simply don’t care about each other anymore?

Today, my son learned to crawl. And along with the crawling, he began to get into things. I followed him around, working to finalize the baby-proofing that I’d already begun. Going after the cat? Baby redirected. Air freshener? Removed from the wall.

But this evening, as I was preparing his dinner, Menininho apparently got into something I hadn’t anticipated. I set him down to eat and he began to scream. Checking his mouth, I saw a rounded white object in his throat (the doorstop cover?) and tried my best to sweep it out, but it disappeared. Next, I flipped him over and hit his back, but nothing came out. He kept screaming and I was frantic. I ran out my door and screamed to the neighbors for help. I pounded on my neighbor’s door so hard my knuckle bled.

My neighbors were home, but no one would answer. One neighbor stuck his head out the door, then closed it. They ignored my hysterical baby and me, even though we were begging for help.

Luckily, I snapped back and realized that as long as Menininho was screaming, his airway wasn’t obstructed (duh), and called the pediatrician. When she called back, she decided that based on my description of the object (ended up not being the doorstop cover and I have no idea what it could have been) that it wasn’t something that would show up on an x-ray and should pass easily on its own. Whew.

But I want to know: How can you ignore your own neighbor’s plea for help?

Last night, my husband was on his way to Target with Menininho when he witnessed an accident farther up the highway. The offending driver took off, and no one stopped to help the man who was hit, even though his trunk was now his backseat. Mark pulled over, checked on him, called the police, and didn’t leave until he was sure the man was alright.

And who hasn’t heard about the attack that took place here in California last week, where 20 teenagers watched one of their own classmates be brutally assaulted? No one called 911 for over 2 hours.

Now, I’m certainly not trying to paint a bleak picture of the world. There is still a lot of goodness all around. But when things like this happen, as little (tonight) or as large (the terrible assault) as they may be, we need to take a moment to reflect.

Are we aware of those around us?
Are we willing to help our neighbors, to aid strangers in distress?
Are we teaching our children to be active and responsible citizens?

If not, we need to be.

A Halloween Past

I’m pretty sure I came straight from the womb as a Tree-Hugging, Bleeding-Heart Liberal.

You doubt me?

Each September, my mother asked my siblings and me what Halloween costume we wanted her to make for us. As a 7 or 8 year old, I requested a princess costume. But not just ANY princess costume, mind you. Princesses are frilly things who wait to be rescued by princes. I’d definitely grown out of insisting that everyone at church refer to me as “Cinderella.”

No, this year would be different. I would trick or treat as the Be Kind to Animals Princess.

[Incidentally, I believe this was the same year I wrote a heated letter to the editor of the local paper bemoaning the over-industrialization of my neighborhood because I felt it was encroaching on the deer’s natural habitat, and because Mom told me I was too young to personally plead the case at the Zoning Commission meeting. But that’s neither here nor there.]

I give my poor mother props for attempting this costume. She created a dress out of our mauve (or was it plum?) colored futon sheets, though it looked a little like a wizard’s garb. The sleeves and bottom were trimmed with silver zigzag piping and she used puffy paint to attempt various animals along the bottom of the skirt.

Just in case that wasn’t enough to get my theme across, I decided that instead of the usual “Trick-or-treat!” I’d say “TrickOrTreatI’mTheBeKindToAnimalsPrincessSoBeKindToAnimals! Thanks!”

That lasted all of 3 or 4 houses and as many confused looks before I chickened (excuse the pun) out.

I wish I had some video of this to show Menininho someday when he complains about being “different,” as most children inevitably do, so that I can prove that I used to be different too, but still turned out OK.

I mean, I did turn out ok…right?

* This post in honor of MamaKat’s blogging carnival, in which I am responding to prompt #5.

My Life With Marfan, Part 3

Previous installments in this series can be found here and here.

I had decided that my mission was to make sure 1) everyone knew about Marfan and 2) people with Marfan knew how to advocate for themselves, especially in emergency situations, so that no one would die of aortic dissections anymore. Impossible goal? Yes. But, I’m only going to stop trying to reach it when I’m dead.

Before I could go about educating anyone else, I realized I needed to educate myself and change my poor attitude. I sent away for materials from the NMF and started researching. In the first year after S.’s death, I wrote an article for the local on Marfan syndrome as a guest columnist and gave a couple of presentations at school to students and staff at my school.

When it came time for my 8th grade graduation present, my mom offered to take me to NYC or to the National Marfan Foundation’s conference in Pittsburgh. The choice was a no-brainer.

Most of my peers plastered their walls with pictures of *N Sync, Leonardo di Caprio, and whoever the other hot celebrities of the moment were. Not me. Every morning I woke up to a big poster of the NMF’s Board of Directors/Professional Advisory Board members. They were my idols. When Mom and I arrived at conference, I felt like I was one of those “nobody” guests at the Academy Awards, watching all the famous people walk the red carpet. “OhmigoshMom LOOK it’s JULIE KURNITZ!!! And she’s talking with CAROLYN LEVERING. Do you even KNOW who they are?!?!”

Vincent Schiavelli ran the teen programming back then. At first I was really nervous about participating. I told Vincent I didn’t feel well and that I’d skip the art exhibit trip that first night. He said he would get a taxi for him and me so I didn’t need to walk. Still, I turned him down. Someday, when I’m on my deathbed, if I get asked “Maya, do you have any regrets?” I will say “Only one. I SHOULD HAVE TAKEN THAT TAXI RIDE WITH VINCENT SCHIAVELLI darn it!” Seriously folks, that man was awesome and a gift to the teen program. He was both serious and irreverent and pushed us to view ourselves as capable. Any time I see him in Tomorrow Never Dies I smile.

I don’t think I can ever articulate what the first conference meant to me. It was a lifesaver for sure. It was freeing to be surrounded by12 other kids who understood what it was like to not be able to participate in gym, to have pain, or fear, or heart palpitations. No one questioned me when I said I couldn’t drink pop. It was just…comfortable.

There were two highlights to my weekend. Our friend Barb had traveled to conference with Mom and me, and she was very well connected in the Marfan community. First, she introduced me to Libby Sparks. Libby was a nurse practitioner working under my cardiologist, and they were starting a Marfan clinic. After conference, I switched my care over to Libby, and that might have been the best medical decision I ever made. Throughout the past 10 years she has watched out for me, cheered me on in life, and basically become a part of our family.

The second highlight was dinner with Julie Kurnitz. Barb knew Julie and arranged for a big group dinner at the hotel restaurant. I cannot tell you what we talked about; all I remember is thinking that I was the luckiest girl in the world that someone like Julie would pay attention to me. She even invited my mother and me to a party in her hotel room later that evening! Carolyn Levering (the NMF’s CEO) was there, along with some other “bigwigs.” Mom was really embarrassed that I had dragged her along (she didn’t think the invitation was real) and we didn’t stay a long time, but I will always be grateful to Julie for making me feel so special and important.

I left that conference with an increased sense of self-worth and an even more fervent desire to spread awareness about Marfan syndrome.

The 1999 conference group: 13 Marfan teens + 2 unaffected siblings

The lovely ladies

Teen Activist

A few entries back I mentioned that one of the people I’ll be on the NMF Conference panel with is a teen named Laurel. Really, she’s fabulous and I am so proud of her for all that she’s accomplished. She was recently featured on http://www.myneworleans.com as a community leader and so I want to brag. You can read about her HERE.