Musings of a Marfan Mom

Yet Another Emergency Hospital Visit


Remember that incident I had last Sunday where I ended up in the ER for 5 hours? Well, the pain has happened again twice since then, the most recent being yesterday just before my end-of-2nd-trimester echocardiogram. As per the other two times, the pain hit me hard and fast. I had to stop every few feet to try to breathe and my eyes welled up with tears.

You might think that if you’re ever going to get sick, the hospital would be the place to do it. Not always. I managed to get out a few words to the receptionist about what was going on and how I needed my abdomen checked right away, and she totally argued with me and sent me into the hall to wait the 20 minutes until my exact appointment time. When I finally did get my echo, the tech was unable to find my descending aorta (not a surprise, given I’m almost 7 months pregnant).

I decided I should mention the pain recurrence to the Marfan clinic’s head nurse, since the cardiologist is still out of town. She looked through my echo reports and told me I probably wasn’t having a dissection but that I should call my OB right away and that she would send over information to my cardiologist. She’s great like that :-)

I left a message for the high-risk clinic nurse and took Menininho home (we’d been at the hospital all day, between his audiologist appointment and my echo). Within an hour, this had happened:
– The OB nurse called me, got information, and paged my OB
– The OB paged my cardiologist
– Cardiologist paged the head of radiology
– OB nurse told me to come to labor and delivery
– The Marfan clinic coordinator called to tell me I’d probably be getting an MRI at the main hospital first (since any ultrasound/echo is bound to be inconclusive at this stage in pregnancy)
– Radiology did some shifting around with their schedule
– I dropped off the Menininho at my friend Stacey’s place, who was kind enough to watch him for me, then drove to Mark’s office so he could accompany me to the hospital
– The clinic coordinator confirmed I’d be getting an MRI and that she’d be waiting for me in her office to personally escort me to the test.

Basically, several departments came together to make sure I got the tests I needed in the way that would be safest for the baby. It would have been easy for them to 1) send me to the ER, where I would have had to get a CT, thereby exposing Smudge to lots of radiation, or 2) just ignore my pain, especially seeing as my cardiologist is out of state right now. I was moved to the head of the line so the personnel needed to be SURE my aorta was fine would be present. In fact, some of these people should have been home for the evening by the time I made it to the hospital, but they stayed with Mark & me the entire time. What could have been a really, really scary situation was made a lot less so thanks to them.

Even the MRI was set up to be easy. Because I’m claustrophobic, the doctors only ran one test at a time, pulled me out of the machine, read the scans, then decided if another test was necessary. Yes, the process took a little longer but I was grateful someone had had that idea because it made me feel a whole lot better since I obviously couldn’t pop a couple xanax.

When Mark and I were summoned into the back room after the tests were completed and offered seats, we feared the worst. We both had assumed I’d get a “You’re good to go. Go change your clothes and head to labor & delivery” and that’d be the end of the that. Turns out that everyone just really, really loves MRI baby pictures! “If you have to go through an MRI while pregnant, you might as well be allowed to enjoy all the awesome pictures,” the radiologist said. He then went through picture by picture and showed us not only my anatomy (first time I’ve seen my hernia!), but Smudge’s as well. It was incredibly neat! I wish I had copies of the pictures to show everyone.

By that point it was nearing 8:00 and the team at labor & delivery was awaiting us. We thanked everyone profusely and headed over there for some more monitoring. Luckily we only had to stay about an hour because the MRI had ruled out any problems with the placenta.

Final verdict: “You’re an, um, complicated patient. And babies do weird things to your insides. So…uh…let’s just hope this never happens again!”

And I am definitely fine with that diagnosis. Having ruled out anything that will kill me or Smudge I am content to just suck up the pain from now till his birth day. All I ask of him is that he doesn’t pull any other stunts: the swelling, contractions, and now this mystery pain have been MORE than generous of him.

I’ve also never been more grateful and impressed with my hospital and medical team than I was tonight. It is clear to me that this is a clinic that cares deeply about their patients as people and Mark and I are so appreciative of that. What could have been a really scary evening was made much less so because of the time and attention these medical professionals put into everything.

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  1. so glad you are able to sleep easier – and glad that there’s nothing serious going on with either you or smudge…


  2. Once again- so glad you are ok! Something about having Marfan and a second child seems to make our bodies go haywire- I have had more than my share of complications this time around too. Hope Smudge doesn’t send you on anymore trips to ER or L&D until his actual birth day though!!


    marfmom Reply:

    That’s what i’ve heard from other women too. It’s pretty much convinced me that a 3rd biological child should not be in my cards.


    Ang Reply:

    Same here- this little girl is it for us.


  3. Jeez, Maya, can’t you ever just do anything the easy way?! Just kidding. I’m so glad you and Smudge are okay and that you got the wonderful experience of seeing the MRI pictures. Sounds like you are right where you need to be. Love you.


  4. I’m glad you are okay. Sounds like you have a good group of people supporting you through this. I hope you are done with the scary pains.


  5. Each time we experience another new symptom or learn frightening new health facts about our Marfan bodies, if there is no remedy, or sure diagnosis, but we are out of harm’s way, all we can do is file away the information. Put it on a back burner, and try to live life as fully as we can. The older I get, the more challenging it is …. guess all my back burners are occupied already! LOL Enjoy every day. Tell someone you love them.


  6. Maya, Your experience certainly does sound complicated! I am so glad it turned out with a good result. Did they give you the MRI pictures to keep of the baby? I hope the rest of the pregnancy goes well and that nasty pain does not return.


  7. Wow, this is reminisent of when we were afraid Alicia was going into premature labor & OHSU had to do a rushed ECHO to find out if her aorta was still within limits to go natural delivery & avoid a C-section. She was in so much pain from the contractions & we also had all the scrambles & phone calls between OHSU & Emanual.

    It’s very good that you are so close to such a well qualified facility. We feel so bad for those that are not so lucky. Hopefully some day every clinic & hospital will hear Marfan’s & chest or adominal pain & be right on the ball.

    Hang in there just a little bit longer. We are keeping your family close in our prayers for good health & pain free days!



  8. Hang on Smudge — keep marinating and here’s to complicated patients!

    Glad things aren’t (too) serious — stay well. We’re sending good vibes your way.


  9. Glad you are better. Be safe.


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