Musings of a Marfan Mom

Tonight: Marfan on Discovery Health

| 8 Comments

Tonight, on Discovery Health, the show Dr. G: Medical Examiner will feature Marfan syndrome. Medical examiners work on the deceased, so as you might be able to tell, the storyline is going to involve someone who has already passed away.

The patient in question is a 22 year old woman who died suddenly while pregnant. The episode will show the medical examiner learning the cause of death was an aortic dissection from Marfan syndrome.

Obviously, this is a sensitive subject. I plan on DVRing the show, but I haven’t decided whether I’m going to watch.

There are a few things to keep in mind. One, there are many different ways to spread awareness of Marfan syndrome. We need to use all of them. Who knows what type of segment will reach out and touch a person, in what type of piece they will recognize their own story? Although the National Marfan Foundation doesn’t have final control over what information gets put into a show, they do work very hard to make sure key messages are presented so that viewers are getting accurate information.

Two, please keep in mind that this is the story of a woman who did not know she had Marfan syndrome. Her story is not the norm for pregnancy in Marfan. As with any aspect of Marfan, early detection and consistent monitoring is the key for living a long, happy life. There is research to show that healthy pregnancies and deliveries are possible for us and I’ve heard so many beautiful success stories both through my involvement with the NMF and this blog.

If you decide to watch the segment, I’d love to hear your thoughts. If I do watch, I may post here about it later.

Be Sociable, Share!

Related Post

8 Comments

  1. I watched it last night, it was pretty sad, she ended up having aortic dissection, and she was 36 weeks pregnant with her husbands son, after they’d had 2 girls…but what saddened me most was that her mother KNEW she had Marfan’s, as did she…she just neglected to tell her ob-gyn, because her 2 other pregnancies had been complication free… She was like alot of young mothers, and people in general… “If it doesnt bother me, why does the doctor need to know?” You have to establish medical history guys, because you never know what can happen to you…

    [Reply]

    marfmom Reply:

    I heard that last night. That’s maddening! I’ll just say that the reason the life expectancy has jumped 30+ years since I was diagnosed is because we have medication and surgery and better detection measures. But, people have to choose to take advantage of what’s available.

    [Reply]

  2. I watched it. It was okay, but very sad. I personally thought that the pictures they showed of the woman seemed liked she had Loeys Dietz. I wish they could have spent a little more time explaining Marfan, but the information seemed correct.

    [Reply]

  3. P.S. The woman did know she had Marfan. She did not tell her doctor or anyone else in her family, only her mother knew. That made the story even sadder.

    [Reply]

    marfmom Reply:

    Her husband didn’t even know? :-(

    I’m glad the information was accurate. It would be interesting if she did, in fact, have Loeys-Dietz. A lot of doctors still aren’t aware of that disorder, since it was just discovered in 2005.

    [Reply]

  4. I watch the show with my husband, it really scared him. I have MArfans and I have 2 girls from a previous marrage now we are taking all precaution (there’s really obstacles) before planning to get pregnant but now he’s having second thoughts. I told him not to worry the girl on the show was not being monitored there’s a big difference!

    [Reply]

    marfmom Reply:

    There is a HUGE difference! If she had been on medication there might never have been a problem, and if there was, the regular echoes she would have received may very well have caught the growth so that surgery could be done. Are there guarantees? No. Even the closely monitored can dissect. But, the likelihood is greatly decreased. The key is knowing your initial risk factor and educating yourself about proper protocol. Good luck making your decision! :-)

    And if you didn’t see, when my son is born in another month or two, I’ll be posting birth stories of other women who have had high-risk pregnancies. If you want to submit either of your daughter’s birth stories, just shoot me an email! :-)

    [Reply]

  5. In the late 1980’s the main known problems and programs with Marfan’s were aortic rupture or tear and the cautions to proceed with great care with were contact sports and pregnancy. When this young woman was diagnosed I would have thought a doctor aware of Marfan’s would have stressed the pregnancy precautions related to it. The show was basic on some tell tale details about Marfan’s such as visible long limbs and internally molecular connective tissue signs but seemed accurate and sufficient. The awareness of Marfans’ today has made great advances in diagnoses and saving and extending lives I am so glad for shows like this to broaden awareness to even one more.

    The young lady here may it be she give life to another whose diagnosis and treatment are unknown that saw or heard about this show to seek knowledge, care and prevent another blind loss. God Bless

    [Reply]

Leave a Reply

Required fields are marked *.