[tri-med] Re: Our baby

----- Original Message ----- 
From: "Samantha Stanley"
>>I guess I am just so overwhelmed with emotions and thoughts I just don't 
>>know which way is up.

Thats why the journey is nicknamed the Trisomy Funpark - it seems to be a 
huge roller coaster ride. It can be scary but at times the view can be 
breathtaking..........

>  1. Is it true that if a child is born with a trisomy that the drs won't 
> do surgeries?

It can be hard, but there are loads of our kids who have had surgeries. What 
you need to find is a doctor who will be realistic with you. Ceci's 
suggestion is a brilliant one and its helped many a parent since she has 
shared it.

You also need to get together current journal articles etc that document 
things like Smith's (the genetic "bible) does - it says that each child 
should be treated as an individual and the parents wishes considered.
Also John Carey and Bonnie Baty's research (though its old now) which 
documents the fact that our kids do reach milestones, even if its delayed, 
and are therefore not "vegetables". Many doctors are simply ignorant and 
operating on information thats 30 years out of date.

It can also pay to ask to speak to a neonatologist and surgeons who may be 
involved with your childs care beforhand, also the hospitals ethics 
committee. Ultimately, legally its a doctors decision as to whether they 
will treat, not ours. That simply means you may have to find one who will. 
Its the same with the hospital, it may be their policy not to treat and you 
need to know that ahead of time. If necessary you can contact John Carey and 
he will speak with the doctors about surgery. John is ALWAYS realistic, if 
he feels that there is little chance he will tell you, similarly if he feels 
your baby has a good chance he will fight to the hilt with you. John has 
spoken with many of Alex's doctors here in Australia for me, and with one 
Aussie family he fought so hard it was unreal.........

In that regard you probably need to come up with both a birth plan and a 
care plan. How far do you and your husband want to go? That seems like an 
easy question for most people until you start to look at it. For example 
will you allow a naso gastric tube to be inserted after birth for feeding? 
Will you allow surgery that means your child has to be ventilated? (there is 
always a possibility that they cannot wean the baby back off - rarely 
happens but its a risk) If you say no artifical ventilation do you mean no 
oxygen? Or do just mean no respirator? Will you allow C-PAP which is not a 
repirator but its similar?

>  2. For the moms...did you feel your babies moving a lot or not much at 
> all?

That seems to depend a lot on whether you have polyhydraminos (excess 
amniotic fluid). The extra fluid can cushion the kicks and make it seem like 
they are not moving much. I was extremely small with Alex though, definitely 
no extra anything, and even so I never felt him kick a lot. He certainly 
makes up for it now, I am constantly covered in bruises after he sleeps with 
me......... talk about a bed kicker!!!

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens
 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: