[tri-wings] Re: Sharon


Hello Sharon,

You have helped me to understand a different kind of torture. Your little 
Sophie was a pretty good size for t18 too. You must have questioned, "what kind 
of a country do I live in, where they would even refuse antibiotics?" What a 
difficult time to try to enjoy the time you had while agonizing at the same 
time. Obviously little Sophie was doing so well because she didn't suffer from 
respiratory problems or central-nervous-system issues that might cause her to 
forget to breathe. The range of presentations is huge, and that is not 
recognized.

I think that a lot of babies are very afflicted and the parents agree that 
comfort measures are best. Perhaps a lot of parents do not think that there is 
sufficient quality of life to warrant treatment. After all, look how many 
people terminate for Downs and that is a walk in the park by comparison. 
(except that there are longevity concerns about who will be the caregivers)

Considering the rate of termination and then the number of people who choose 
comfort care, there are so few that desire treatment that the cost is 
minuscule. 

All we can do now is to work to increase awareness and push for change. We can 
do that in honour of our children. Do you know of any tri 13/18 who rec'd 
appropriate care in the UK in recent months or have things gotten worse? A 
doctor I met in Chicago a few months ago confided to me that often Downs babies 
were denied cardiac surgery in the US. 

A private inquiry on the medical treatment provided for people with 
developmental disabilities in the UK just came out. If you are interested, I 
will send you the link.

Barb




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