[tri-med] Newly diagnosed




Dear Rory

Welcome to the list, i am glad you found us, although I wish you had no need 
to.  What a beautiful name you have chosen for your daughter.

I too am pregnant with a T18er, a little boy Connor.  Unfortunately I have 
no experience with the hernia condition as it is not something Connor has.

I can give you some general advice though.  Firstly, each trisomy child is 
VERY different.  Some people on here have sadly lost their angels during the 
pregnancy, others have made it to birth and shortly afterwards and some 
people on this board have children who are alive and well.  Ill leave it to 
Karen to find the specific details for Caris, because she always comes up 
with something.  But the best thing to do is just to monitor your child's 
condition and do exactly what you have done, ask about specific problems as 
they occur.

Whether there is a point to surgery generally depends on the condition of 
the baby at birth, sadly you cant really tell until this time comes.  You 
just have to be prepared either way to provide "comfort care" or to go for 
the surgery.  Some babies have come through various surgeries well, although 
Im not sure how they compare to what Caris needs.  Usually it is fairly 
clear where only comfort care is appropriate.

I have done a birth plan regarding Connors postnatal care for my hospital.  
Obviously yours will be different in view of Caris' problems, but it may 
help you to consider everything you need to think about. Its not specific on 
surgery as we have no specific issues as you have but it includes my basic 
thoughts on what I would like done and my hospital are happy with it.

If you would like me to mail it to you, email me on demipowell@xxxxxxxxxxxx  
You can also mail me about any other pregnancy issues, Im always here to 
help!  Well for the next 3 weeks anyway cos im due then.

I am thinking of you all,I know how hard it must be, the first few weeks are 
certainly the worst.

Lots of love

Demi and Connor



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