Vera went to see the Renal doctor today (the same one that called her 'low IQ'). All we wanted was a routine kidney ultrasound for Wilm's Tumour. As suggested by the literature we've read, we should do one every 6 months for Vera.
Ian brought Vera and I was late for the appointment (from work). When I saw him, he had just come out of the room and was fuming. He had asked her for the ultrasound, and she said there's no need because Vera's fine, since her blood pressure is ok. And said Vera doesn't have to see her anymore. She asked what is the basis of getting a scan and we told her about the literature we've read from the states, where so much more research is done on T18. She was quite disbelieving. Ian asked her on what basis she's judging that Vera is ok, and she says because she is the doctor. Okay. You're the head of the pediatric renal dept, so kudos to you for a great attitude.
Why can't she get a scan? We are the ones paying for it. Why doesn't she want to see Vera anymore? A waste of time on a lost cause?
You know what, WE don't want to see her anymore either. If you can't change 'em, change 'em.
23 February 2009
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2 comments:
I totally agree, change em! I am sorry that you are going through this. It is a frustrating and very helpless feeling.We have a couple when we leave I jsut am so down. I will pray that you find one that will be pro Vera! I love the pictures of her sleeping amongst her presents. Don't know if you have a genetitist(genetics) but he orders things when we feel we need them. Also our urologist is the one doing her ultrasounds and scan on her kidneys. He is not very pro Annabel and I am contemplating changing this one. Give that 1 year old a big hug and praying for you and Ian.
I am sorry to hear of this terrible attitude. Once I was doing medical research on trisomy 13/18 and I came across an article written by a doctor about a baby with trisomy 18 for whom nothing could be done. It was different than the other articles; you could just sense the caring and humanity in the words. I wrote to the doctor to tell him I appreciated his sensitivity.
He was so very pleased to hear from a parent. He told me that he remembered that baby well. (It was 4 years prior) He said it was his day off and he was going to the hospital for a procedure for himself, but first he went to visit baby Rose. He said he held her in a face to face position and their souls connected. He wrote, "Here was a perfect soul within a broken shell of a body. I held baby Rose then, but later, during my procedure, I could feel that she was holding me."
Whenever I hear about a good doc I go overboard to show appreciation. I think that a good test of the humanity of a doctor (and person) is how they treat these special babies.
So sad for that doctor not to know what she is missing.
Barb
Annie's mom
www.anniefarlow.com
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