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#25
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10-17-2011, 01:20 PM
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| My Rank: PRIVATE Poster Rank:10144 female Join Date: Oct 2011 Posts: 14 Mentioned: 0 Post(s) Quoted: 0 Post(s)
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Re: Patau Syndrome - Trisomy 13 - CYCLOPIA
Very sad :'C I reacted to this becuase this disease is mentioned in a horror film and one of the villians is supposed to have it. But these real picture are really quite something. Very tragic of course. OT: Note to self, don't eat apple cake again while watching these pictures. |
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#28
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12-24-2012, 01:16 AM
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Re: Patau Syndrome - Trisomy 13 - CYCLOPIA
I took care of a baby with trisomy 13 mosaicism. We got him when he was 3 months old. We'd known about him since before he was born and our facility had told us not to even expect him to live long enough to get to us. He had a cleft palate and 6 fingers on each hand and 6 toes one each foot. And he was absolutely PRECIOUS. They'd told us not to get close with him because he wasn't going to make it but that was just impossible. We'd been told he was profoundly mentally retarded but he seemed to be much smarter than they'd initially thought. He laughed appropriately and smiled all the time. He had his preferences with nurses, too. He'd want me to almost hang him over my shoulder with his head nearly upside down on my back and fall asleep. HE WAS SO SPOILED! He dressed nicer than anyone I know. Everyone made sure he had what he needed. He met major landmarks and when he'd celebrated his first birthday we demanded he be taken off of our DNR list. We'd been told if he lived to be one that they'd go ahead with repairing his cleft palate. We'd had the surgeons meet with us and were preparing to start with serious plans for his future. He died May 25, 2010. It was one of my biggest heartbreaks. RIP S.Z.M. |