how do you forgive doctors for making mistakes?

June 20, 2007

Recently, I was told that after a year Chrystine's colobomas seems to have

" grown " ?She has been seeing her opthamologist here in ton since age 4

months. I was floored, knowing that colobomas don't grow... She supposedly had

or HAS bilateral optical nerve colobomas. So, I decided to get a 2nd

opinion. I drove her to the Eye INstitute in town, WV. 2 more

opthamologists

look at me and tell me-you know-i don't know what it is. But, apparently the

anomaly is now noted in her retina as well. I'm taking her back to Cincinnati

Children's for a 3rd opinion. I already have to drive her 5 hours away for a

urologist, nephrolgist, cardiologist, geneticist, feeding team... I thought

at the very least, I could trust an West Virginian opthamolgist. But, I guess

I can't. She is saying, Well, I don't know what Chrystine's eye anomaly is.

I haven't spoken on here lately, cause I am feeling so lost. It's that

funny feeling in my stomach before I found this home in Charge. They're talking

about Noonan Syndrome. I'm not convinced.

I'm from small town WV, of course. It was soooo hard to get my family and

friends to accept Charge. Around here,everyone knows everyone and new ideas

aren't easily understood. They figured that doctors didn't know what was really

wrong with Chrystine, so they named it Charge, but deep down most think there

is something more serious. I have had to literally fight a couple family

members to get them to understand that Charge is something broader than a word

or a label.

I can't accept that doctors could have been wrong and that every minute I've

devoted to learning and teaching about Chrystine's core syndrome was in

vain. I suppose there is a chance that docs in Cincinnati could confirm the

colobomas diagnosis-

I have had problem after problem with doctors since her birth. I'm scared

they'll lie and say it's anything to avoid a potential lawsuit. I have no

intention of suing, let me make that clear. But, WV is or was the leading state

where doctors were being sued for malpractice and I strongly feel that's the

reason that this state is lacking any suitable care and that the state's people

have little trust in their doctors.

So, what do I do? I'm starting to think that Chrystine's 3 West Virginian

opthamologists don't know (as the saying goes) their butts from a hole in the

ground. What if she doesn't have colobomas at all? Then, it's not Charge. And,

to me that's just WRONG. It's been over a year. I'm really hurt about this.

Chrystal

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