i am so sorry momma i wish i could give you advice but all i have is hugs!
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So seriously, anyone who has read this far?
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I can't sleep. I'm so angry. I wrote a letter. Thoughts? Should I take out the "I'm so suing you" part at the end? I kind of think maybe.
Oh, and if you read all this too, you must be REALLY bored, but thanks.
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Dr. UAV:
I am in receipt of your letter dated August 18, 2009, informing me that you no longer wish to be my doctor. I found the timing of your letter quite odd, as your staff terminated our relationship back in May. My understanding at that time was that my request to delay my 16-week appointment made you and your staff uncomfortable, thereby necessitating the severance of our doctor-patient relationship. From your letter, it seems you may have been personally unaware that this occurred.
That confusion aside, I am writing this letter to inform you of an incredibly disturbing matter which was brought to my attention at my latest prenatal appointment with my new health care provider.
Following the laboratory tests ordered by your office at my 8-week appointment on April 1, 2009, I was assured that all of my test results had come back normal. My file indicates that the results were reported to your office on April 8, 2009. As I had struggled with the decision of whether or not to keep this baby, which I openly shared as I cried throughout my 8-week appointment, the news that all was well was incredibly comforting and helped me make the decision to bring this new life into the world. Assurance of my normal test results was given both over the phone by a member of your staff and at my 12-week appointment in your office on April 29, 2009.
Imagine, then, my shock to learn only yesterday, September 10, 2009, that I am heterozygous for the delta-F508 mutation. My new health care provider noticed this in my file, and also noticed that there had been no indication in the file that I was ever informed.
Your failure to inform me of this test result is inexcusable. You have known that I am a carrier for cystic fibrosis for five months; I am just finding out now, in my 31st week of pregnancy. You have taken away my options for genetic counseling, further testing, and a possible termination should my baby have the disease.
The incompetence shown by your office in this matter is astounding. I would have never made the choice to bring a child with cystic fibrosis into this world. [While my relationship with my daughter's father, who happens to be of Irish and German decent, has rapidly deteriorated in the past few months and I am uncomfortable tracking him down to ask for genetic testing at this point, I am quite certain he would have agreed to be tested in April. Either way, it is far too late to do anything should he also be a carrier.
]I can now only sit and wait and pray that my baby does not have the disease, while constantly facing her [strike:1 in 116] chance of being affected. This wait is excruciating, and the added stress during an already stressful pregnancy is unforgivable. Words cannot express the outrage I feel at you and your office for putting me in such a horrible predicament.
It is my sincerest hope that you will reevaluate your practices in light of the complete and utter mismanagement of the early stages of my pregnancy by your office. I especially hope none of your other patients are denied knowledge of, or in fact given assurances despite, extremely frightening test results.
Should you hear from me again, it will be through an attorney, likely because my precious girl has cystic fibrosis. I can now only pray it does not come to that.
Sincerely,
vegasgrl
Edited (new in brackets) based on poster comments
I can't sleep. I'm so angry. I wrote a letter. Thoughts? Should I take out the "I'm so suing you" part at the end? I kind of think maybe.
Oh, and if you read all this too, you must be REALLY bored, but thanks.
Dr. UAV:
I am in receipt of your letter dated August 18, 2009, informing me that you no longer wish to be my doctor. I found the timing of your letter quite odd, as your staff terminated our relationship back in May. My understanding at that time was that my request to delay my 16-week appointment made you and your staff uncomfortable, thereby necessitating the severance of our doctor-patient relationship. From your letter, it seems you may have been personally unaware that this occurred.
That confusion aside, I am writing this letter to inform you of an incredibly disturbing matter which was brought to my attention at my latest prenatal appointment with my new health care provider.
Following the laboratory tests ordered by your office at my 8-week appointment on April 1, 2009, I was assured that all of my test results had come back normal. My file indicates that the results were reported to your office on April 8, 2009. As I had struggled with the decision of whether or not to keep this baby, which I openly shared as I cried throughout my 8-week appointment, the news that all was well was incredibly comforting and helped me make the decision to bring this new life into the world. Assurance of my normal test results was given both over the phone by a member of your staff and at my 12-week appointment in your office on April 29, 2009.
Imagine, then, my shock to learn only yesterday, September 10, 2009, that I am heterozygous for the delta-F508 mutation. My new health care provider noticed this in my file, and also noticed that there had been no indication in the file that I was ever informed.
Your failure to inform me of this test result is inexcusable. You have known that I am a carrier for cystic fibrosis for five months; I am just finding out now, in my 31st week of pregnancy. You have taken away my options for genetic counseling, further testing, and a possible termination should my baby have the disease.
The incompetence shown by your office in this matter is astounding. I would have never made the choice to bring a child with cystic fibrosis into this world. [While my relationship with my daughter's father, who happens to be of Irish and German decent, has rapidly deteriorated in the past few months and I am uncomfortable tracking him down to ask for genetic testing at this point, I am quite certain he would have agreed to be tested in April. Either way, it is far too late to do anything should he also be a carrier.
]I can now only sit and wait and pray that my baby does not have the disease, while constantly facing her [strike:1 in 116] chance of being affected. This wait is excruciating, and the added stress during an already stressful pregnancy is unforgivable. Words cannot express the outrage I feel at you and your office for putting me in such a horrible predicament.
It is my sincerest hope that you will reevaluate your practices in light of the complete and utter mismanagement of the early stages of my pregnancy by your office. I especially hope none of your other patients are denied knowledge of, or in fact given assurances despite, extremely frightening test results.
Should you hear from me again, it will be through an attorney, likely because my precious girl has cystic fibrosis. I can now only pray it does not come to that.
Sincerely,
vegasgrl
Edited (new in brackets) based on poster comments
Oh, vegasgrl, this must be so distressing. This is a terrible oversight on his part and has caused so much worry on top of an already difficult time. I have no practical advice, just hugs and hopes that all is well for both of you.
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Yes! Send the letter and contact an attorney!
I am so very sorry this happened to you, there is no excuse, this is negligence.
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Hope for a negative result for your little girl,
Deb
I am so very sorry this happened to you, there is no excuse, this is negligence.
Deb
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Your doctor is so incompetent and evil.
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I am so glad, you changed hcp early on!
I am a carrier for CF as well. I sort of suspected, as my mother is a carrier. At first it was scary getting these news, and then I started reading about it. First of all, CF is relatively rare, it is even more rare, to have to people, that are carriers get together, and even if both are carriers, the child does not necessarily have CF.
Also, I am not sure what the father's ethnic background is, but being the chances of being a carrier varies greatly around the world.
Just make sure, they keep an open eye for it after birth. Most likely everything will turn out to be fine for your little baby.
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I am a carrier for CF as well. I sort of suspected, as my mother is a carrier. At first it was scary getting these news, and then I started reading about it. First of all, CF is relatively rare, it is even more rare, to have to people, that are carriers get together, and even if both are carriers, the child does not necessarily have CF.
Also, I am not sure what the father's ethnic background is, but being the chances of being a carrier varies greatly around the world.
Just make sure, they keep an open eye for it after birth. Most likely everything will turn out to be fine for your little baby.
8
DDC crashing
First
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Second: Send that letter as it is. The only thing *I personally* might change is the 1/116 chance- because he won't know where you got that number from and you shouldn't have to write it out, but that's me. Would you consider trying to talk to the UAV sperm donor? you could offer to pay for his testing and just ask for the time of the blood draw. I don't know the background on your situation but you might be surprised.
Good luck, I'll keep you and your precious little girl in my prayers. Please try to stay calm, as impossible as it may seem, stressing won't do either of you and good.
First
Second: Send that letter as it is. The only thing *I personally* might change is the 1/116 chance- because he won't know where you got that number from and you shouldn't have to write it out, but that's me. Would you consider trying to talk to the UAV sperm donor? you could offer to pay for his testing and just ask for the time of the blood draw. I don't know the background on your situation but you might be surprised.
Good luck, I'll keep you and your precious little girl in my prayers. Please try to stay calm, as impossible as it may seem, stressing won't do either of you and good.
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Send that letter--it was professionally worded and it's a message that Dr. needs to hear.
I know you're still processing right now, so I'm definitely not trying to dismiss your fears, but the odds are still overwhelmingly in your favor that your little girl will be born completely healthy. I have known several stories where parents were given scary odds that their babies would be born with terrible disorders (downs, fragile x) and the children have been fine. My DH, DS, and most likely the new baby are all carriers for a rare blood disorder themselves--all totally healthy.
Oh mama, I'm so sorry. What an awful situation he put you in.
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I also think you should send the letter.
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He's Irish/German. Like me. Good ol' 1 in 29 chance for us thoroughbred Europeans.
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This is a very good point. The letter had various incantations, some of which were insanely b*t$/y. I think one of them followed that with "You will pardon me if my numbers are not perfectly accurate, as I was forced to find my information via the internet instead of through the genetic counseling your office declined to recommend." I'm so, so pissed, but that's probably too much.
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Originally Posted by belltree Also, I am not sure what the father's ethnic background is, but being the chances of being a carrier varies greatly around the world. |
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Originally Posted by bubblette The only thing *I personally* might change is the 1/116 chance |
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That sounds like a very well-written, well-documented letter, and I agree with others that you should send it. The only thing *I* might change, because I had a professor who was a stickler for it, is the word "disease" to "disorder." But I see them used interchangeably pretty often, so maybe they're not highly differentiated.
Hang in there. I think attempting to look at the favorable odds of 115:116 is a good strategy, so keep trying. But know also that your brain needs to wrap itself around the idea and "grieve" the idea of a potentially sick child. So take all the time you need and lean on friends...
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