Musings of a Marfan Mom

Recognizing the Beauty

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A few months ago, I posted some photos on Facebook of Baby J that emphasized his long extremities: hallmarks of Marfan syndrome. One of my friends commented that it was interesting to see pictures of a baby with Marfan and she wished she had more pictures of herself as a baby. I have lots of pictures of myself as a baby, but not many that seem “Marfy” to me (though my parents didn’t know about my diagnosis at the time).

I love photographing Baby J’s Marfan features, from his long, flat feet to his pectus excavatum (indented chest). I realize this might sound odd, so allow me to explain.

Most of us with Marfan syndrome go through a period of time where we really stick out. This is usually during adolescence, when we’re most concerned about looking like everyone else anyway. When I was in middle school, I was nearly 6 feet tall and weighed 90 pounds. My pectus deformity made my breasts look weird. I was uncoordinated. People noticed, and not in a good way. I felt ugly.

As I got older I’ve gained some perspective, and I see the beauty in Marfan bodies. When I look at the little babies I see some of the cutest babies in the whole world. The teens are so graceful. I desperately want J to have this view his entire life and to never feel as ugly as I did.

I realize the world may look at some of these photographs and see something less than perfect. They may wonder why I focused on the “faults.” I know that as his mother, there will undoubtedly be a time that J will ignore my protestations that he is beautiful because I’m “just his mother” and I “have to say that.” My hope is that by having these photographs he will see I believed in his beauty so much that I made the time to document it for him.

How about you? Anyone else photograph what makes your kids stand out?

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10 Comments

  1. Awww those pictures remind me so much of Lee when he was little. I loved (well I still love) every one of his Marf features, even if I didn’t know why they were there. His long toes and his “made for piano playing” fingers. Loved his pectus – it was something the family seemed to obsess on suggesting all it’s possible uses from hiding cheat sheets for school to using it for popcorn when you’re watching a movie. The only thing that I wasn’t so keen on was the stretchy, bendy stuff but that makes me feel weird no matter who is doing it! LoL

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  2. I love these pictures and I can so relate! I have pictures of the kids transplant scars and we talk about their different bodies a lot. Was so proud this year as Q wore a 2 piece swimsuit all summer, declaring that her scar didn’t bother her anymore (it’s down her entire breast bone to bikini line!

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    marfmom Reply:

    That’s awesome! I didn’t feel that confident until college, when I had no choice but to wear a 2 piece on a trip (long story). My scar goes from the middle of my chest to my belly button.

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  3. I must be off and I don’t mean to offend but I’m not seeing the problem. I know you say the body parts are longer but they look fine to me. Are there health issues as well? I’ve never heard of marfan syndrome before I met you on Twitter. Is it hereditary to everyone in the family?

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    marfmom Reply:

    I’ll explain :-) Marfan syndrome is a life-threatening disorder of the connective tissue, which is kind of like the glue that holds your body together. Since your connective tissue is almost everywhere, Marfan can affect most of your body. It specifically causes problems with the skin, bones, lungs, eyes, and heart/aorta. The most dangerous part of the syndrome is that the aorta, the main blood vessel coming from the heart, can grow to be too large and develop weak spots called aneurysms, which can tear and kill you. I have it, as does Baby J. A person with Marfan has a 50/50 chance of passing it on to any kids.

    Not sure if you can see in the 3rd picture, but J’s chest sinks in. Mine does too. This can get more pronounced with age. People with Marfan often (though not always) grow to be quite tall and can be very thin. Scoliosis and kyphosis are common too. I have a more comprehensive explanation of Marfan here.

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  4. I love those pics….he is so adorable. I love to take pics of my sons sticky outty ears. I get people making comments a lot and not every nice ones :((( it’s so upsetting and bugs me to no end. I LOVE his ears and I hate when people think they are being funny or whatever. Ugh. This is a great post….thank you :o)

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  5. OH Maya, that does sound very serious. I see what you mean by your baby’s chest now. I just though the way he was sitting, maybe he had a little fat roll that made it appear sunk in :-)

    I pray you all will live long lives in spite of this disorder. God is able and he answers prayers. God bless you and your family :-) And excuse my ignorance. I certainly was clueless. Thanks for enlightening.

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    marfmom Reply:

    Thank you! And thanks for asking about it! It’s estimated that half of people with Marfan are currently undiagnosed, so I always appreciate the chance to educate a bit about it because you never know who will read it and recognize themselves, you know? :-)

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  6. This might sound weird, but the pictures of his indented chest make me cringe a little, because it looks really painful!

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    marfmom Reply:

    I promise it doesn’t hurt!

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