[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by jennifer robertson on 3/2/2008, 7:42 pm, in reply to "5 month old Daughter with partial 22 trisomy, looking for others with same situation"
76.236.151.151
Hi Jayme!! My daughter Alyssa was diagnosed with partial trisomy 22 at 1 week old. She developed NEC at 1 1/2 weeks old and lost a large amount of bowel. She had a fundo and gbuton done at 3 months old. I've found alot of answers through Gene Reviews and Stephanie with C22. Unfortunately, due to numerous medical difficulties Alyssa died in October. I've found support through C22 and other parents. If you need anything let me know.
jennifer
--Previous Message--
: Hi there,
:
: My 5 month old daughter was recently
: diagnosed with Partial 22 Trisomy, and
: I am looking for resources to expand
: my knowledge and families to share my
: experiences with.
:
: She is 11 lbs and 20.5 inches long.
: She hasn't grown much since she was 2
: months old. She is a reflux baby and
: we are getting a g tube put in and a
: fundalplacation in the next few weeks.
: She was born at 35 Weeks at about 30
: weeks gestation. She has a weird echo
: on her liver, but otherwise she is OK
: so far. The Doctors say she is unique
: and we really don't have any case
: studies to go off of yet...
:
: I hope to connect with someone who has
: experience with this.
: Sincerely,
: Jayme Southard
:
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