Pierre Robin Network Message Central
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Pierre Robin Adult
Posted by Emily on 3/10/2011, 8:01 pm
I am a 26 year old female who was born with pierre robin. I was lucky and the hospital I was born in knew what the syndrome was. I had lip tongue fusion twice, a trache, a hyatial hernia, a feeding tube, and I am sure they sewed the roof of my mouth together eventually. The reason I am posting this is two fold. The first because I want parents to see that your children to grow up to have extremely full and fullfilling lives, I went away to college I have a bachlors degree and work for a great company. My dreams are coming true because of my understanding parents and wonderful doctors. I am excited about the rest of my life. The other reason I am posting is because I am terrified that when I have children they will also have prs. Does anyone know what the chances are of me having a baby with prs, and if significant advances have been made? My parents didn't know I was going to have it, can you tell durring pregnancy now etc? Please if anyone knows or has advice I would love to hear it. Thank you
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