[tri-med] Re: 5 month old Trisomy 13 baby

No he has never had any heart problems.  And it has been happening since he was 
about 8 weeks old.  Actually it happened in the car while I was driving home 
from a doctors appointment.  He was crying (He hates the car!) and all of a 
sudden I couldn't hear him anymore.  I looked back at him and he was blue.  So 
I pulled over and I pulled him out of the seat.  And I really thought I had 
lost him at that point.  But I just held him for a few minutes and he started 
crying again and his breathing regulated and he was ok.  He just slept for a 
while.  It of course happened the next time I took him in the car.  So I 
stopped going anywhere with him by myself!  Then he had surgery at 10 weeks of 
age and after the surgery it happened a lot when he would cry.  Now it happens 
mostly when he throws up.  I thought it was him choking on his formula because 
he is fed through a g-button, he has trouble swallowing.  But I've been trying 
not to get scared when it happens so I can tell what all is happening.  It all 
seems so crazy because I feel like I have to be his doctor!
Thanks
Nancy
 Michelle Waite <jwaite@xxxxxxxxxxxxx> wrote:

----- Original Message -----
From: "jonathan dixon" 
> Hi, my name is Nancy, I have a 5 month old baby boy with Trisomy 13. I
need some advice if anyone has any. He will be really mad for some reason
or another and then he will become very rigid and turn blue and his
breathing becomes very >shallow.

Hi and welcome Nancy. Don't think we've "met"?????

I don't have any personal experience to pull from on this topic, sorry.

Others mentioned seizures which would be my first thought. Does your son
(name??) have any other medical issues--esp heart? Cardiac issues are my
only other thought.

Has he done this since birth or is it a new phenomenon?

Michelle mom to Alex (15,partial trisomy 14 mosaic) and Molly (11)
MichiganUSA


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