Tag Archives: pediatrician

Marfan Through a Mother’s Eyes

Today starts a three-part series: Marfan Through the Eyes of the “Unaffected.” You’ve read my story, but what about how Marfan has affected those around me?

Over New Years Mark, the baby, and I met one of my college girlfriends and her fiancée for lunch. This friend has chronic pain, worse than mine, and at one point during the meal gestured to her fiancée and remarked “Yah, I don’t even know why he’s marrying me!” Her fiancée pointed at Mark and said, “Well, he married her!”

And that got me thinking…why did Mark marry me? [I mean, besides love and all that jazz.] How did he/does he view Marfan that makes him want to stay, when it’s made other guys run away? And from there, I wondered about the effects on my other family members growing up. Aside from the medical bills (OH, those bills!), we never really discussed the impact my illness had on them.

So today, you’ll hear from my mother. Next Monday my brother is posting, and Mark will round out the series.

I’ve already written some about my mom, but as a quick intro, she’s a Brasilian immigrant, former dancer, and current PhD student. She raised three kids, four if you count my dad. And this is her story of my diagnosis.
There were a few things about 8 year old Maya that defined her: her love of everything having to do with horses, her skinny arms and legs, and her political activism (yes, even at age 8 she stood up for things, wrote editorials and kept an eye out for unfairness anywhere).

That my children were not athletic was not a surprise to me – after all, the apple does not fall far from the tree. However, Maya’s inability to do some of the most basic things (ride a bike, hit a ball, etc) began to cause me concern when it appeared that she lacked the muscular strength to do them. At her yearly check up I brought up my concerns to her pediatrician, who began to study and measure Maya as if he had never seen her before. He said to me, “I am sorry, I don’t know why I didn’t see it before,” and then he referred us to a life of doctor visits. First a geneticist, then a cardiologist, then an ophthalmologist, and so forth…

I have to admit that the magnitude of the diagnosis did not impact us for a few years. Maya’s condition was not straightforward, so the diagnosis was nebulous – maybe she has Marfan syndrome, maybe it is something else, in the meantime, we will treat her as if she has it. So, for the first few years we did not really think that she had Marfan, we just thought there was something amiss – something that needed caution and concern, but was not as scary as it appeared.

So, our biggest immediate concern was deciding what to do about horse-riding lessons. I was in favor of following the cardiologist’s orders to stop lessons, but Maya’s dad (a horse rider himself) did not want to remove the one activity that was central to her 8-year-old life. So, we let Maya continue through one more riding season. Luckily the horse cooperated until the last riding day of the season when he knocked Maya off and into a pile of manure.
The next year was a growth spurt year and Maya’s dad took her to her yearly doctor appointments. That was the end of horse riding. Maya’s dad was duly frightened by the aortic growth and the memory of the last riding day.

My fears over the next few years was less about what might happen to Maya and more about what was happening to her – she was becoming an angry child. I spent less time on potential problems and more time trying to figure out how to help Maya with the issues that were relevant to her 10, 11 and 12-year old world. This natural tendency to a pragmatic approach has been helpful to me and also to Maya.

I could talk about all the things we helped Maya try, but that is her story to tell.

For me, there have been moments when I shook my fist to the heavens, moments when I was sick with worry, moments when I was sad for all of the things that Maya would miss. There were days when I wanted to lurch out at indifferent (or even mean) middle schoolers, days when I wanted to be able to just go into a store and buy Maya a pair of pants that fit – right off the rack! There were frustrations, set backs, relentless doctor visits and the accompanying bills, and this persistent knowledge that my child is not like all of the other children.

However, I have to honestly say that while these feelings existed they did not persist – mostly we were busy living life. We focused on possibilities not impossibilities. Thus, when Maya could not ride horses, we said, “Ok, let’s see what you can do and let’s do those things.” Maya’s dad took golf lessons with her, we took her swimming, she rode her bike, and we went to art museums, libraries and on short hikes. We participated as fully as possible in every aspect of life. Emergency hospital visits sneaked in and forced us to pause, but once the scare was over, we plowed on. Worries about the future crept into our thoughts periodically, so we did our best to crowd them out with a busy and full life.

This is not to say that we stuck our heads in the sand and pretended that Maya was not affected. We became informed, we read and sought research and experts; we encouraged Maya to become informed, we were diligent about health care, we followed guidelines (sometimes too strenuously). Sometimes we made good choices (helping Maya find a support group) and sometimes we were over-protective. No one parents perfectly.

The bottom line is that we came to understand that we do not control some of the critical aspects of our health. Our behavior can affect our health, but we do not decide who inherits what genes, who develops what disease or all that happens to us. But we can control our responses. And for me, that meant that sometimes I just raised my arms, took a deep breath and rode life’s roller coaster with the wind in my face. After all, if Maya can manage so well, so can I.

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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.

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Small Blessings

I dreaded Menininho’s 9-month checkup yesterday. I was sure I’d get bad news.

You see, I love baby wearing. I carried Menininho in a sling for months, and then transitioned to using our Ergo. Lately it’s been more and more difficult for me to carry him though. Marfan patients have restrictions for how much weight we can carry, because lifting weights raises our blood pressure, which in turn puts pressure on our aortas. My restriction has always been around 10 pounds, but when I was pregnant, my doctor told me I could stretch it to 20 in order to carry Menininho, and then I’d have to go back to my previous restriction.

So, I’ve known my days of baby wearing are numbered. Many of my friends’ babies surpassed 20 pounds months ago. It made sense to me that a 9 month old would reasonably weigh more than 20 pounds. I even started to write a post mourning my baby-wearing days.

You can imagine my surprise when the nurse informed me that Menininho is still shy of 19 pounds! I bet we’ll make it to Christmas before I have to give up carrying him.

I’m really grateful for small blessings like this. Isn’t it amazing how we’re always given the right child for us?

BabyWearing

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What Goes In…

…must come out. (Alternatively titled: When you shouldn’t call the pediatrician)

Every mom has been through having a constipated baby. There’s no way to sugar coat that. At the suggestion of my BabyCenter email (you know you’re a mom not when you find a photo essay on normal vs. abnormal baby poo to be interesting, but when you can read it while eating a bean burrito), I called Menininho’s pediatrician to see what to do about it.

The nurse and I talked for a few minutes and she recommended I buy a glycerin suppository (about $8) to use twice and then give Menininho 1-2 ounces of prune/pear/peach juice (5 for $4) every day for a few days to keep him regular. I bought the juice but the pharmacy was all out of the suppositories.

Thank goodness.

After Menininho’s dinnertime bottle I gave him 2 ounces of apple/prune juice and it seemed to nip the problem in the bud.

Flash forward to this morning.

I’ll spare you the details and just say the damage was…extensive. I stripped Menininho to his diaper and carried him into my bathroom to give him a bath.

This would have been easy, except for the GIANT SPIDER IN THE BATHTUB.

Killing the spider would have been easy if my husband hadn’t moved the spider killing spray outside.

Instead, I grabbed the only chemical I could find: Scrubbin’ Bubbles Shower Cleaner. By the time I drowned that nasty creature, I was getting a headache from the fumes.

I moved Menininho to the living room while I filled the sink in the other bathroom. Once he was bathed, I realized his diaper had leaked all over the living room carpet. I left him wrapped in his towel while I treated that with carpet cleaner.

No sooner was that cleaned, and Menininho dressed, diapered, and fed, then he spit up all over himself.

In summation, try the juice before the suppository and definitely only mix the two as a last resort. I can’t imagine how much worse the morning would be if we’d listened to the nurse.

The day can only go up from here, right?

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My Life with Marfan, Part 1

I’m not quite sure where my story starts, but I suppose the Coolest Thing to Ever Happen to an 8 Year Old is as good a place as any.

Ever since my parents first used me to get them free candy, I’ve wanted to be in a parade. I used to beg my dad to paint his ugly pickup truck magenta and hang streamers from the ladder racks and let me ride in the back, tossing candy to the other kids. (My mother is eternally grateful that the year Dad offered to indulge me in this fantasy, he missed the deadline to register his truck by a couple of days.)

Finally, when I was 8, I was set to increase my cool factor by 110% by riding on the Girl Scout float in the Pataskala Street Fair parade. It was a hot day and all of us Brownies had to wait a while for the start of the festivities. I don’t remember much of what happened, but at one point I woke up in the gravel next to an ambulance (how convenient!). I didn’t know it then, but it was the first of many fainting spells. Someone fetched my mother and soon I was riding home in Dad’s ugly pickup, instead of standing atop the Girl Scout float in all my 8 year old glory.

Shortly thereafter, Mom took me to my pediatrician’s to find out why I had fainted. In retrospect, I wonder why she didn’t just chalk it up to the heat and me locking my knees and leave well enough alone. But she didn’t, and my doctor knew my family well enough to know to take mom seriously. He looked through my chart for a while, bustled around taking some measurements, and said “I’m sorry, I really should have caught this earlier.” And then he told my mom about Marfan.

The doctors at Childrens’ Hospital confirmed the diagnosis, which sent my family into a tailspin. I understood that Abraham Lincoln had had the same illness, which I thought was pretty awesome. I wanted to tell everyone at school. I mean, having the same illness as a dead president had to make me famous by association, right? However, Mom suggested that my diagnosis might be something better kept a secret.

For the next 4 or 5 years, I just sort of existed in this awkward place where I didn’t really understand what Marfan meant, and neither did my parents. They meant well, but were at times suffocatingly overprotective, and I began to rebel. Mom finally suggested I write a letter to my doctor and ask if he had any other patients with Marfan that I could talk with.

That letter changed my life.


My first (and last) equestrian competition, taken about a month after I was diagnosed with Marfan

You can read the rest of my story here: Part 2 Part 3 Part 4

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Vroom, Vroom

I think I’ve figured out why my blood pressure is still not totally back to normal. I’ve decided at this point it has little to do with my recovering from childbirth and everything to do with driving in California. Today I had to drive Menininho to the pediatrician (about a 25 min. drive) to get him checked for reflux (which he unfortunately has). Over the course of my trip there and back:

# of times I was cut off: 2
# of times I was stuck behind a car going at least 10 mph BELOW the speed limit: 3
# of times I got lost on the way to the doctor: 1
# of times I got lost on the way home from the doctor: 2

*Sigh*

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Inexperience

Today was my first official day as a Stay-at-Home-Mom (Mark’s first day back in the office).  Menininho decided to make commemorate the occasion by making me the victim of his first Epic Spit-up. The benefit of this? The mess was so massive I had to (got to!) shower. It was awesome. And since Mark was already up, he decided to commemorate the occasion by making us pancakes. Mmmm!

How did I decide to commemorate this big day? By acting like the first time mother that I am. Mark hadn’t been at work more than an hour when, during Menininho screaming (he had a screaming kind of day today), I saw big white chunks all over Menininho’s tongue. Knowing a little bit about thrush, I became concerned. It had been awhile since he’d eaten, the chunks definitely looked like cottage cheese, and they covered his tongue. So, I called the pediatrician’s office and the nurse who answered said to bring Menininho in. This meant I had to call Mark out of work to come pick us up, since my car won’t arrive until Monday.

Our pediatrician is so busy she pretty much only does well-baby visits, so we saw another pediatrician in the practice (but I knew that’s how it worked before we picked the practice). Anyway, you know that Huggies commercial where the dad is changing his son in the hotel room and the baby boy sprays the ceiling like a fire house? Well, I always thought that was an exaggeration. Until I had Menininho. Changing his diaper on the scale, he got me, himself, the scale, the table, and possibly the nurse. That’s my boy! 😉

Now of course, by the time the doctor came in to see us, the big chunks on Menininho’z tongue were gone. The doctor kindly informed me that 1) thrush is on the sides of the mouth, not the tongue and 2) thrush doesn’t wipe away. Basically, Menininho didn’t swallow some milk after the feeding and a half hour later it had curdled on his tongue. I am really hoping that I did not become the joke of the day for the break room. I also felt terrible for having called Mark out of work for that. At least he was able to go back for the rest of the day.

Moral of the story? Um, I don’t know. I thought it would be Google image illnesses before calling the doctor, but then I Googled “baby thrush” tonight and it looked a lot like the curdled milk sooooo, yah. Oh well.  Chalk one up for experience.

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