Musings of a Marfan Mom

Jennifer’s Birth Story #2

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Awhile back I invited readers to submit their birth stories, to be posted while I take a maternity leave. Since Baby J is here, it’s time to post them! Some of the women have Marfan syndrome like me, but not all. If you have questions for the authors, feel free to leave them in the comments section; I’ll also try to email them any questions I see (as soon as I have time).

Jennifer Levesque, 38
Diagnosed with Marfan at age 12 -inherited from father
Mother of two
Methuen, MA

In May of 2005 I became pregnant with my 2nd child. Luckily, I wasn’t as sick as my first pregnancy. I went to the cardiologist, had echoes and everything was fine.

When it came time to give birth, again I had a good experience. Things went a lot quicker. This time my water broke on its own. My husband, daughter and I were at a Barnes and Noble bookstore when it happened. I thought I had peed my pants. I waddled into the bathroom and realized my water had broke. We rushed home, put our stuff in the car, called the grandparents to pick up our daughter at the hospital and then left for the hospital.

I was in labor for about 7 hours before James Thomas Levesque was born. I had another epidural, which went fine. I only had to push about 5 times before he came out.

When we left the hospital I knew I had post-partum depression. I did not feel happy to have another baby to take care of. I had forgotten how hard it was. My breasts were so sore from breast feeding and I was so tired. I felt guilty that I felt this way.

January 12, 2006 was a normal day. James was 10 days old. I went to the ob/gyn in the morning because I thought I had mastitis. I had it with Meghan. It turns out I didn’t have it. I was relieved. In the afternoon we all took a nap. I woke up before the kids. I felt so much better. I even put on my favorite jeans (they fit!) and some make-up. I told myself that I would be okay. When my husband came home from work we decided to go out to dinner. It was our first time out together as a family. After dinner we went to Kohl’s to look around. While my daughter was looking at toys, I had a really sharp pain in my abdomen. It hurt a lot and lasted for a few minutes. I just had a baby so I attributed it to that.

My husband was worried about my pain, so we went home. The pain subsided, but I was exhausted. I had never felt so tired before. I took a shower and put on my pjs. When I was walking down the stairs my husband asked me if I was okay. I said I was fine. I sat on the couch and fed my son. After he was done I was holding him and then I felt a very sharp pain in my back. It felt like someone was stabbing me. I put the baby in his bouncy seat. I asked my husband to get me Tylenol, but I knew it wouldn’t work. By the time Randy came back with the Tylenol, I was screaming. I didn’t know what was happening to me. Randy called 911. I was so scared. My 3 ½ year old daughter was crying. I felt a ripping feeling down my chest. I knew this was bad!

I was taken to a local hospital, the same hospital where my son was born. The nurses and doctor worked quickly. Everyone was aware that I had Marfan Syndrome. I had a CT scan within an hour of being in the hospital. The pain was excruciating. After the CT scan the doctor came in the room and told my husband and me that I had an aortic dissection. I had heard those words from my cardiologist before. I knew that was bad, but I didn’t totally understand what that meant. The ER doctor explained what had happened and that I would be med flighted to Mass. General. I was in shock. How could this happen to me?

At Mass. General it was confirmed that I had a type B dissection. I would not have to have surgery. I was relieved. I felt like if I had to be cut open, then I would definitely die. I spent 5 days in ICU. I was on morphine and I felt like I would have to be on it for the rest of my life. On the fifth day in the hospital, the pain started going away. I got to get out of bed and practice walking. I was starting to feel human again. I spent 3 more days on a step down unit and then my husband got to take me home.

I knew that my life had changed. I now had to take medication and I was so afraid that my aorta would suddenly rupture, but I was so happy to be back at home reunited with my family.

It has been over 4 years since my dissection. My descending aorta is growing and I am getting closer to surgery. Some days have been difficult, but ultimately I have realized how precious life is and how wonderful it is to see the smiles of my children’s faces everyday.

During those 4 years I also experienced organ prolapse. My bladder, vaginal wall and uterus literally fell down. I have had 2 surgeries, including a hysterectomy, to repair the problem. I had no idea this could happen. It makes sense that a person with Marfan could have this problem since everything is held up by connective tissue.

I don’t want other women with Marfan or other connective tissue disorders to be scared by my story. I want other women to be informed. I never knew that something could happen after the pregnancy. I also did not realize that a dissection could occur without dilation of the aorta. My entire aorta was within normal limits on the day of my dissection. I think it is important for women to know that every pregnancy is a risk and to think it through thoroughly. I wouldn’t change a thing about my decisions, but I do wish I had known more.

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2 Comments

  1. Jennifer,
    It is so great you shared your birth stories. While I can only imagine how frightening your dissection was, it is so important to share. I’m going to keep an eye out for those symptoms after I give birth and definitely not pass go before heading straight to an emergency room.
    Glad to hear you are doing alright. Thanks again for sharing.

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  2. Thank you for sharing your story! I am 26 years old and my husband and I are researching having our own child since I have marfans. My mom has marfans but did not know until after she had her second child, me. She had to have her valve replaced and when I was a teenager she had the same issues of bladder and other organs falling due to connective tissue issues. I have random palpitations that go away and my cardiologist has said everything is normal right now. My older sister did not have biological children but recently adopted children. She recently was told by the cardiologist that her aortahas increased in size.
    We really want at least one biological child. We want to make sure this will not increase my chances now of complications or will increase the progression of issues for the future.
    Thank you for sharing again!

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