my dd was born healthy, was bf well and ad a good colour 2 her. d doc said she ad a heart murmour but was nothin 2 worry about. took her home, the next nite, now 3 days old, we rushed her in2 r local hosy where they didn't believe nething was wrong wit her until she collapsed n we got rushed out d room. a team from alder hey came n took her away. we didn't know whether she would make it at this point.
found out she ad massive cardiac abnormalities n was in multiple organ failure, it didn't look like she'd pull thru. we ad a blood test done n found out she ad DiGeorge syndrome. then at 2 weeks old she was well enough 4 her 1st heart op, it ad neva been performed b4. her chest was left open 4 2 weeks but once it was closed over she started 2 recover quickly n at 9 weeks old she came home.
since then she's in n outta hosy all the time. she's a happy girl who hardly eva cries. n now we're avin problems gettin her immune system checked n the local doctors won't put her on perminent antibiotics even tho the digeorge booklet says all children should b on em until they've ad their immune systems checked. she's 19m n still not ad mmr as it's live vaccine. she's peg feed as aspirates n has severe reflux. eats some solids but chokes easily on lumps. is on lactulose n glycerine suposeteries 4 her bowels. she's very behind on her development, gets help from portage n cdc. i was just hopin 2 talk 2 ppl wit similar experiences. new 2 mumsnet! she's my 1st!