Stories from the Global Moebius Syndrome Community.


We knew Baby Tre was going to be a special baby since before he was born. He was diagnosed with Hydrocephalus when I was just 26 weeks pregnant, at that…

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Today is the day. I sat in a chair and have begun to write. How long have I talked about it? Ten years to be frank. I have said this…

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Moebius Syndrome: Tyler

Moebius Syndrome: Tyler

I had an uneventful pregnancy up until 29 weeks. I was then diagnosed with polyhydramnios (that is too much amniotic fluid) An ultrasound done at the stage raised further questions as to the health of the baby. The chest and abdomen measurements were too small, one exam questioned if there was a bladder another suggested difficulty finding the stomach! I left work at noon to be hospitalized that same day and then flown by helicopter to the nearest Women’s and Children’s Hospital.


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Moebius Syndrome: Vicki

Moebius Syndrome Vicki:

In 1990 I was blessed with the birth of my baby boy – something I had waited for all my life.  There was only one catch – he couldn’t suck.  At the time of his birth, a pediatric neurologist told me that he had something called Moebius syndrome, and that meant he would never smile. I accepted that, forgot the name of the syndrome, and took my little boy home.


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Moebius Syndrome: Willem

Moebius Syndrome Willem:

Willem was born at 10:40am, July 12, 2005. My first thoughts were how happy I was that big brother Ben would have a playmate just shy of two years younger. As with my other two children, it was love at first sight. As his first day progressed I was calm but concerned and confused that I could not get him to nurse. After 11 hours of repeatedly trying to get him to latch on, one of the nurses said that they would have to try to feed him with a syringe because he doesn’t seem to want to suck. He ate from the syringe.


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I was born in 1969 at Hospital de San Pablo in Barcelona. The doctors did not know what was wring with me. I was in an oxygen chamber for many days. My parents were very smart and decided to move me to another hospital. The doctors told my parents there was a lot of damage done during my birth. I wasn’t going to be able to hear or run. Fortunatly they were wrong. I grew, thanks to my mother and all her great efforts to make me healthy. If it weren’t for her I do not know where i would be today.


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