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June 2012 Moms
Just got bad news from our CVS :(
We just found out that our daughter will be born with a connective tissue disorder called Marfan Syndrome. My husband lives with the disorder and we knew that she had a 50% chance of inheriting it, but it was still a blow to hear. We have no way of knowing the severity and what and how severe of symptoms she will have, but the most serious possible symptom is an enlarged aorta which will necessitate surgery and constant monitoring at best and at worst sudden death. I would love some thoughts or prayers right now 
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Re: Just got bad news from our CVS :(
I have Marfan's, along with a lot of my family, but have lived a perfectly normal life. I actually never knew I had the disorder until a doctor recently suspected it due to some of the features. I encourage you to visit the Marfan's site. All of the symptoms outside of the aorta really don't limit your daughter having a healthy and normal life. Well, she shouldn't play contact sports, but I think that's so minor.
As far as the aorta, as long as she's monitored yearly, it's really likely that she'll never have any issues. Most Marfan's patients don't have any surgery related to the disease until well into their 60s. Even then, if she keeps up with her cardiologist then any procedure should be very minor. Sudden death rarely occurs and when it does it tends to be in cases of unmonitored patients.
If you have any questions or just want to chat, please feel free to PM me. We won't have our LO tested until after birth, but I have thought a lot about the disorder.
Thanks so much for the comments. I will be sending a PM your way...
Please don't worry. I know that's easier said than done, but really if your child ends up with Marfan's he/she will very likely go on to lead an extremely normal life. Outside of possible aorta enlargement, all other symptoms do not affect quality of life in any way. As long as you have your child monitored yearly, then any heart complications can be solved with small procedures.
I also have a mild form of the disorder as well as many of my maternal relatives. Absolutely all of them led a totally normal life and there have been no complications leading to death or life threatening circumstances. If you have any questions, feel free to PM me as well.
It's not easy not to worry when it's your child, but this disorder will have such a minimal effect on your child's life.
Thoughts and prayers headed your way
Elonah [3], Bentley [1]
My best friend in high school has Marfan's and leads a perfectly normal life. She is monitored closely and is on beta blockers, and yes, when she was 18 she suffered an aortic dissection (the most common and probably most life threatening symptom of Marfan's) but has recovered and now is doing quite well.
But, she also has a very obvious and I would imagine severe form; she has the very classic symptoms, and even had a tubal at 21 because they feared her body might not survive the stress of pregnancy. But honestly, I feel like her case is really a worst case scenario, and as far as everyday life goes, she leads a very normal one.
Prayers for you and your family!