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Marfan's Patient-25

Personal Stories: Marfan Syndrome Person (female)

My Daughter was diagnosed with Marfan Syndrome at the age of 10. She is now 25 and has a dissection due to child birth. She was released from Pediatric Cardiology at the age of 23. Doctors said that her Aorta was normal and that she did not have Marfan syndrome. My daughter was seen by many doctors from the age of 10 to 23 concerning this condition. At the beginning I was told that she was not allowed to play any organized sports, nor anything that would raise her heart rate. I asked about child birth (even at the early age of 10), it was recommended that she did not have children.

As the years went on and he aorta checked yearly, the doctors finally dismissed her at 23. Again, I asked about child birth and I was told that my daughters aorta was fine that she could have 5 to 10 babies normal. She became pregnant a year later. She told her baby doctor that she was diagnosed with Marfan syndrome but not sure if she had it, (because what we were told for the past 13 years).


He paid no attention and treated her like a normal girl expecting. She had her little boy on Aug. 30th, normal delivery and 2 days later her aorta dissected from the top of the arch to the very end. Her aorta is now 4.1 cm and still growing, at the time of her dissection it was 3.4 so in 20 months it has enlarged 2.9 cm. She is being closing watched and now taking blood pressure medicine to keep her pressure down.

Now she is experiencing joint problems, swelling of her wrist, ankles, fingers, and her knees. She has been to a specialist who is now sending her to a rumatolgist and since she is now on disability, she has no medical insurance (has to be disable for 2 yrs before she can receive any medical coverage) that’s another story. Our family doctor has done some blood work and says that she has a high influmation count, ostero arthritis and Lupus. I think this has something to do with her dissection but her heart surgeon does not think so, any thought on all of this? Please reply, and please ignore the mis-spelling. Thanks for taking the time to read our story.

{ 1 comment… add one }
  • Karen Hancock January 20, 2011, 12:04 pm

    Hi! read your story and completely thought of my daughter’s story. I had a pediatrician see her at the age of 15 and he mentioned marfan’s but, said there were no tests to confirm this. He mentioned she should see a cardialogist. She did and was managed for years. She wanted children and the cardiologist said she shouldn’t have any. She really wanted children and I told her I would stand by her. Sh was considered a high risk pregnancy. She had the baby and sky is now 7 going on 8 and has marfan’s. In 2004 , she became pregnant again andthe docs told her to abort the pregnancy because her aorta could split. My daughter didnot abort the pregnancy and when she was 37 weeks pregnant her aorta split and she was admitted to a trauma hospital and they did a cesarean and fixed the aorta. this has been a miracle. She is 35 now and now has a type B dissection in her thoracic and also one in the abdomen. What a journey. she is managed on medication, but, I am wondering why don’t they fix it? they wait until organs are compromised to do surgery. She is going to a specialist at john hopkins and I pray everyday God takes care of her. I don’t know what to do except pray everyday.

    Sincerely
    Karen Hancock

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