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Prenatal today: The pretty devastating news

1694 Views 48 Replies 41 Participants Last post by  mommy2two babes
I'm a carrier for cystic fibrosis. My doctor, who fired me for being such a bad mommy as to consider a homebirth, NEGLECTED TO TELL ME THIS. I was told "all your results are EXCELLENT! Your chances of anything going wrong are SO SLIM!" They knew FIVE MONTHS AGO. I found out today. I didn't send my OB records to the midwife until last week as a) I didn't request them for a bit since I was under the impression that everything, all my tests, NT scan, CF, etc., were "EXCELLENT" and b) they gave me a hard time about getting them since I didn't have a "doctor" to send them too.

I'm utterly devastated. First there's the fact that I'm genetically challenged; just trying to soak that in is pretty tough to swallow. Especially when I'm just sitting here all alone trying to do so. Then there's the fact that THOSE BASTARDS DIDN'T TELL ME.

What's normally done in situations like this is a recommendation for genetic counseling. Usually they'll test the father to see if he's a carrier. In my case that's difficult, as he has abandoned she and I long ago. Interestingly, we were still on fairly good terms WHEN THEY FOUND OUT IN APRIL; I probably could have gotten him to test for it then. Now, it's out of the question.

And the thing is, if he *is* a carrier, then there's talk of termination. I can without a doubt tell you that if I had known he was a carrier too back in April I would have terminated without hesitation and never looked back. Now? It's obviously WAY TOO FREAKING LATE.

So what does all this mean? SpermDonor has a 1 in 29 chance of also being a carrier. If he *is* a carrier, my LO has a 1 in 4 chance of having CF. That means her odds right now are 1 in 116.

1 in 116.

1 in 116.

I'm sitting here trying to talk myself into looking at it from the 115:116 chance that's she's fine. It's not working that great. I wish to God I could get him to test; if he's negative I can stop worrying all together. But he's a ginormous UAV and that's never going to happen.

I hate that OB. I hate that I'm alone right now. I hate that I'm genetically mutated and therefore may have given this precious innocent girl CF on top of giving her an absent father. I swear to God that OB better hope she's part of the 115, because I'm going to sue him for all I can if she's not.

I can't believe this is happening. And I know it's going to be how it's going to be; I can't do anything about it now. I need to get over it and chill out. (My first blood pressure reading today was right after my mw told me and it was alarmingly high. We did it again after I had calmed down and it was back to normal.) But I'm so very, very angry right now. And pretty freaked out too.

Thanks for listening.
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i am so sorry momma i wish i could give you advice but all i have is hugs!
So seriously, anyone who has read this far?

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.


Edited (new in brackets) based on poster comments
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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 that letter baby girl the WAY it is! he needs to know even if it wasnt HIS over sight but one of his staff
I am so sorry that you have to go through this stress - I hope you are some how able to find some peace in all of this. I thought the lady was very nicely worded and conveyed yourself very thoroughly and professionally.
I am so sorry! You have every right to be angry! Send the letter!!
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DDC crashing, I saw this on new posts.

You know something? I would totally send the letter AND simultaneously contact a lawyer. That is INEXCUSABLE.

And that aside, huge, huge, huge hugs to you and your precious girl. I can only imagine how you must be feeling right now. I'll be thinking of you.
Yes! Send the letter and contact an attorney!

I am so very sorry this happened to you, there is no excuse, this is negligence.
Hope for a negative result for your little girl,

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Your doctor is so incompetent and evil.
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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DDC crashing


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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DDC crashing. i would send that letter, it was very brave to write and needs to be heard.
Oh, Vegasgrl--many hugs to you. I can totally understand how mind-blowing this news must be and how betrayed you must feel by the incompetency of your former OB.

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.
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Oh, vegasgrl. I am infuriated for you. That's just unthinkable.
Oh mama, I'm so sorry. What an awful situation he put you in.
I also think you should send the letter.
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Originally Posted by belltree View Post
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.
He's Irish/German. Like me. Good ol' 1 in 29 chance for us thoroughbred Europeans.


Originally Posted by bubblette
The only thing *I personally* might change is the 1/116 chance
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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I am so sorry for this stress and the incompetence of that doctor!

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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I am so sorry this is happening to you!

The letter is perfect!
I'm praying for you and your baby vegasgirl. Everything will work out in the end.

I'm wondering however if there isn't a test that they can do to tell you conclusively whether or not your baby has it or not. Maybe in this circumstance an amniocentesis would be good (if that's even possible to test for CF with an amnio)?

If it's neg you can stop worrying altogether! I don't know, I haven't done any research on it, it's just a thought.
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