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Hi, new to the group

Posted by on Jul. 12, 2010 at 11:28 AM
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Hi. I'm Kathi,my daughter Lindsey Marie who is 9 months and 3 weeks old, was diagnosed with Heterotaxy Syndrome, when I was 5 months pregnant, she had a pacemaker put in at just over a week old, we are waiting for her heart reconstruction surgery and  going in July 26th to meet with stomach surgeons, Heterotaxy is a rare syndrome, that has to with the heart, intestines, spleen. Either it can affect all 3 or just 1 of those things. Unfortunately Lindsey has all 3. Her spleen is in bites and pieces, her stomach is on her left side, her oxygen levels are normally low (in the low to mid 80's), and her intestines are malrotated.Back to her heart, she only has 2 and a half chambers and both are the left side of her heart.She has 4 holes in her heart, we are hoping that some of them will close by themselves, her cardiologist says they will have to repair at least 1 cause it is to big to close by itself. But with everything that's wrong with her she sure is a very happy baby.

by on Jul. 12, 2010 at 11:28 AM
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Replies (1-4):
aubreyluv
by New Member on Dec. 11, 2010 at 2:43 AM
Wow. You must be one strong momma. My son was born with truncus arteriosus with a vsd and asd. he has had two open heart surgeries and needs many more!
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XsweetpeaX1988
by New Member on Dec. 11, 2010 at 5:10 PM

im sorry hun hang in there my son has TGA VSD and is getting ready for his second open heart For valve and pacemaker.  My son you would never tell that he is as sick as he is! he is a verry happy 2 year old. Our babys that go threw all this now become a stronger person in life. And im sure god wouldnt have givien us babys with these kid of problems if we were not strong parents and willing to fight and do eveything we can to keep them with us. I hope everything works out with you.

MelissaBC
by New Member on Dec. 17, 2010 at 6:54 PM

all the best and welcome to the group

MelissaBC
by New Member on Dec. 23, 2010 at 2:43 AM

take care and best wishes

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