Musings of a Marfan Mom

Baby J’s First Echo

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Thursday was a big day: I had my 6 week check-up with my OB and Baby J had his first echocardiogram to check on his aorta.

I felt like I was able to achieve some closure with my OB and I’m glad that I won’t have to be back in that office again. (To his credit, he understood why I was so upset about constantly being asked about having my tubes tied; he actually volunteered that it probably seemed like the residents were saying women with Marfan shouldn’t get pregnant and promised to talk with them about their approach.)

I’d scheduled the appointments with enough time in between for M, J, and me to grab lunch in the hospital cafeteria. Here you can see how I *almost* caught one of J’s elusive smiles on camera.

To be honest, I was disappointed at the clinic waiting room. It’s a children’s hospital, but there were no toys or books for the children in the cardiology clinic: just a TV. If I’d known they were running 40 minutes behind I would have taken my kids for a walk. As it was, M got ahold of the masks, motioned for me to put one on him, pulled it completely over his face, and entertained everyone running around in circles and bumping into chairs because he couldn’t see.

The echo tech who took us back was so helpful, carrying J for me so I could carry an overtired M and push the stroller. And thankfully, J was so exhausted himself that he didn’t fight the set-up for the test and actually slept through the whole thing! The conversation with the tech was a little odd though.

Tech: So…does someone in your family, like, have Marfan or something?
Me: (confused) Um, besides HIM? I have Marfan too.
Tech: You do? And wow! How did they diagnose it so early in him?
Me: Well, we did the blood test.
Tech: There’s a blood test?
Me: Yes. I had it done to find my mutation, then I had each of my sons tested.
Tech: Oooo, so it’s, like, one of those gene things.

Yah, one of those gene things…seeing as Marfan syndrome is a GENEtic disorder and all that.

For those of you who aren’t familiar with them, an echocardiogram is basically an ultrasound of the heart and aorta. It checks the function of all the valves and the size of the heart and aorta, particularly to see if aneurysms have developed. People with Marfan need to have them every 6-12 months. The whole thing takes about 40 minutes.

J’s new doctor didn’t want to schedule an appointment with us to go over the results, so I asked the tech to page him when we were finished. Of course he shows up to shake my hand just as I’ve got it in the diaper pail, fishing out the sippy cup lid that M. tossed in there (yes I wore gloves!). We’re classy like that! :-)

It appears our personalities did not mesh. He seemed to be more of an abrupt, give-the-parent-the-minimal-amount-of-info type of doctor. I’m the patient (and now the parent) who wants to see aortic root measurements plotted on the z-chart and copies of all the reports.

The great news is though, that everything looked normal for now. Yay!!! We go back in 6 months, I’ll give the doctor another chance then, and hopefully it’ll be another great echo!

For now, we have two and a half glorious weeks without ANY doctors’ appointments! We haven’t had this since I got pregnant I think. Next up for Baby J is his eye exam, in about 3 weeks.

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10 Comments

  1. glad it went well. hoping that you and the doc can find common ground as you get to know one another…

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  2. Glad the echo went well. Any advice on getting doctors to share more info and make sure we get reports. I was promised a report from Joshua’s cardio visit back in June and also from the Marfan clinic in December. Haven’t gotten either of them yet and really don’t want to end up paying medical records to send them to me!!

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    marfmom Reply:

    That’s so frustrating! My only advice is to be really persistent when it comes to the records. I’m calling for J’s today and I’ll give them 2 weeks, then calling again if I don’t have them. Eventually they’ll get sick of me. J’s doctor actually wouldn’t give me J’s measurement period. He said since it was normal it wasn’t important. I’ve heard too many stories of doctors misinterpreting normal though that I don’t trust it. I wasn’t in the mood to argue but next visit I’m going to start off the appointment with clear expectations. When I start working with new doctors, I just tell them that I’m the kind of patient/parent who has questions and is going to do research on my own and expects that I’ll get my questions answered fully. Then I tell them to let me know if they’re not comfortable with that. I’m also going to bring a copy of the z-chart I think, so that the cardiologist won’t have an excuse to not plot it out for me.

    Oh and another idea is to bring a flash drive with you to each appointment and ask the doctor to put the records on the flash drive then and there.

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  3. Your conversation with the tech made me laugh, in that “Oh yeah, I’ve had THOSE conversations” way. I once had a respected orthopedist look me in the eye, when I was 37 years old and 8 months pregnant, and say, “I’ve always considered OI [my genetic bone disorder] to be a childhood disorder.” I was so dumbfounded I didn’t think to ask if he missed the day in med school when they explained that genetic disorder can’t actually GO AWAY. More recently, a doctor doing a pre-op exam on me said, “Wow! OI. I have a friend whose son inherited that from her. Did you know it’s hereditary?” Aye yi-yi.

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    marfmom Reply:

    Wow. I wish I could say I can’t believe they said that, but I can. Definitely funny to read now (esp. the orthopedist!), but I can imagine it wasn’t so funny then. I finally just started writing down all the dumb things I’ve heard so I can go back and laugh about it later. :-)

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  4. Lee’s has been so lucky doctor wise. His cardiologist was so awesome – he would spend enough time as we needed with us (even listening to Lee’s stories which do have a tendency to contain a LOT of detail) Each of Lee’s echo was done by the same technician except for twice. She got a little teary his last appointment, well so did I. The only doc I had issues with as his pulmonary physician, he insisted Lee see him through the asthma clinic, who knows why so then he would be confused as to why we were there. Ugh.
    Anyway I am glad things went so well with baby J’s echo. Lee had to be sedated for his ( he was 2). I hope baby J continue to go well and he stays cooperative! LoL

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    marfmom Reply:

    I hope Lee’s adult cardiologist is as great! I know how hard it is (and emotional!) to have to switch doctors.

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  5. I’m glad to hear you are going to insist on the level of information you need from your baby’s doctor. Back when I was a child with Marfan, my mom worked in a medical library. It was pre-internet, so she used her job to read every medical journal and article on the condition. And when they were going to fix my chest bones, my mom lobbied to have a metal rod put in my chest to support the bones as they healed. My doctors turned their noses down at her, said that the “new method” was much better and worked in 97 per cent of cases. Well, it didn’t because they didn’t factor in Marfan. My bones went back worse than before and I had to have a very painful surgery twice in my childhood because they wouldn’t listen to her.
    I say this only to remind you that your instincts are sound. Insist that you get the information you need. Insist that he answer all of your questions and provide all of the details you require. Because they may have a medical degree, but you are J’s mom and have more experience with Marfan than they ever will. Never doubt your instincts, and if this doctor won’t play ball – find a new one. You need a physician for your baby that you trust implicitly. You must work as a team for J’s benefit. And being pushy by demanding his medical information is much better than trusting in their interpretation and finding out later they were wrong.

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  6. Those were some odd conversations, with all of the care providers. You handled it all really well :)

    Glad to hear about the good echo results! Congrats to little J!

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  7. First of all, yay that J’s echo is normal! That’s wonderful news. I don’t know how you do it Maya. You are totally super mom; masked child running around the patient’s waiting room, baby in your arms and clearly you haven’t lost your mind. I think I would’ve crumbled by now. lol :)
    Anyway, I’m really glad that J’s echo looked great. I hope that it’ll continue to look great and that J’s new doctor works out.

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