Getting another opinion....

[Guest guest]

I thought you might like to read the message below...it is about a mother in

Australia with a 4 month old in renal failure (kidneys don't work). This story

really shook me...

and Rob 18 JAS, and Alport syndrome (renal disorder)

From the Nephkids mailing list (kids with renal disease):

I just had to share the rest of the story with you all regarding the mother from

Australia who was unaware that she could do PD at home on an infant. She

stumbled upon my sons website and said that her son was end stage renal like

mine and she had chosen pallative care. Imagining my son dying when he has done

so well, and I know three other babies that are doing so well I contacted her to

find out more. She was told that she would have to keep her son inpatient for

three years in order to do dialysis, so she chose pallative care. Unwilling to

let this happen, I started doing research and posted the request for help on

neph kids and started emailng doctors in Australia that I could find to try to

save this 4month old baby. It ended up that there are many centers in Australia

that do PD on infants at home, so. Thanks to a lot of help from other parents

on neph kids other Australian mothers were able to get her an emergency

appointment with a nephrologist and a second opinion. Apparently, by the time

the mother contacted the nephrologist, there were three other doctors trying to

locate HER to help her because they heard his story on the internet. I am

unaware of what the result was with the second opinion, but we just found out

that this mother had recieved some bad information from an adult hospital and

then took her child home to die because she was not given the proper information

and or resources to advocate and treat her son.

I'm telling the remainder of this story for a number of reasons, 1. to

emphaisze the importance of communication between doctor and patient and staff

2. to emphasize the importance to think outside the box and look at second

opinions and 3. to thank everyone, this child has a second shot at life when he

was surely facing death...I think it is our holiday miracle...no matter where we

are with our own lives, with all that we have going on with our children, no

matter how many patients our nephs tirelessly treat...we stuck together and

helped a baby...and it took people from all around the world to do it. Thank

you, and may you all have your own miracles this holiday!