Test scares... and support

[vlasta216]

I never realized how scary this whole situation would be until last night. I never understood why people refused testing, but now I know why.

Last night my dr called saying my blood tests (and whatever else tests they gave me) looked fine *but* that he discovered I'm a carrier for cystic fibrosis (!!!!). : Now my partner (who doesn't have insurance) must go to the hospital and get tested to see if he, too, is a carrier (please NO). If he is negative, then I have nothing to worry about. But if he's positive, the baby has a 25% of having cf.

This is all very frightening b/c I have to wait and wait... I'm trying to discover how much this test will cost him (which is nearly impossible for some reason) and see if we can get financial help. Argh! My dr says I need the test, though I think this is something new and I haven't heard of other going through this.

I just want this baby to be born... and to be healthy!

Anyone else going through/have gone through testing scares??

[happymomma]

((Hugs)) I guess one reassuring thing is that the chances of him being a carrier as well are slim....plus even if he was the baby has a 75% chance of being just fine.

With the third one I have learned to decline just about all the tests....I stress and worry too much to be able to deal with the percentage or chance tests.

I would say try not to worry but that advice would be impossible for me to follow so I will say look at the odds...the odds are very slim that he is also a carrier and then even if he is, that the baby would have cf. ((Hugs))

[Peacemamalove]

Originally Posted by happymomma

((Hugs)) I guess one reassuring thing is that the chances of him being a carrier as well are slim....plus even if he was the baby has a 75% chance of being just fine.

With the third one I have learned to decline just about all the tests....I stress and worry too much to be able to deal with the percentage or chance tests.

I would say try not to worry but that advice would be impossible for me to follow so I will say look at the odds...the odds are very slim that he is also a carrier and then even if he is, that the baby would have cf. ((Hugs))

I agree and hugs to you mama!!! Things like this can be upsetting but try not to let it worry you as Your babe is feeling everything you feel .....Take care mama and just do what will put your mind at ease...

[Artichokie]

Hi...I'm lurking from December ddc.

I also was surprised to discover that I was a carrier for CF. DH got tested and he was not a carrier. But, we honestly weren't horribly worried. People can live long and productive lives with CF.

[bobandjess99]

Just remember....you could always, if it is a financial burden or for other reasons, choose NOT to get your dp tested. Basically, knowing whether or not he is a carrier is the difference between knowing that your baby has a 0% chance or a 25% chance of having CF. Is that knowledge worth the cost (emotional, financial, etc) of having the test done?

I have found that a good way to start making more empowered choices is to REPLACE the phrase "have to". PLEASE do not say "i have to" "my partner has to" etc.

NO. You really, REALLY DON'T!.

you might, after reviewing all the facts, CHOOSE to.
You might, after careful consideration, CHOOSE NOT to.

but you do NOT "have to" do virtually anything in this world.

now, there might be consequences, but again, that becomes part of the decision making portion of your CHOICE.

I "have to" get a PAP smear.....*IF* I want to continue seeing this doctor.
I "have to" get the GBS test.....*or* the hospital(that i am CHOOSING to deliver at!) will give my newborn a spinal tap just in case.
I "have to" deliver this baby in a hospital...*or* suffer the rath of my partner/family.....*OR* go into financial ruin to pay out of pocket for a midwife......*OR* go unassisted because there are no midwives in my area......

Do you see how there is always a choice?


There is ALWAYS a choice. You might not like ANY of the possble choices....they might all suck eggs to the extreme....but there are really VERY few, if any instances where you do not have a choice.

[pampered_mom]

Originally Posted by vlasta216

Argh! My dr says I need the test, though I think this is something new and I haven't heard of other going through this.

What evidence did your Dr. have that said you "needed" to have the test? What will be done differently as a result of the test results? What would *you* do differently as a result of the test results?

These are just a few of the questions I ask myself before agreeing to any tests in pregnancy.

[vlasta216]

Originally Posted by bobandjess99

Just remember....you could always, if it is a financial burden or for other reasons, choose NOT to get your dp tested. Basically, knowing whether or not he is a carrier is the difference between knowing that your baby has a 0% chance or a 25% chance of having CF. Is that knowledge worth the cost (emotional, financial, etc) of having the test done?

Thank you all. This is my first pregnancy so I'm just now realizing that many of the tests being done are ones I don't actually need. I had no clue I even had this cf carrier test done to begin with! It's amazing how hospitals fail to explain what they're doing... I don't know if I want dp to get the test done. I just feel pressured. I would like the peace of mind to know that he is negative, but then if he's positive, I don't want to be put in that position. I just want this baby to be born, without all the initial test scares. My dr really wants dp to get this test done, but I wouldn't have even wanted the carrier screening done on myself if I had known about it. I wish I had a midwife, but I may be too late and one may not be covered under my insurance.

Thanks for the advice. We may not get this test done with dp, especially since NO ONE is disclosing how much it costs! And if they wanted to know if the baby is okay, can't they just test me and leave the uninsured dp out of it?

[kath]

i tend to agree with everyone else that you don't need the test done at all. that said, i think reasons doctors and others (myself included) like to have tests done is so they can prepare. if you baby does has cf (very low probability), then one can prepare for that when he/she is born. my uncle had cf and lived a long life (for the time). i know lots about cf and did lots of reading on it. i had the testing done to see if i was a carrier because i knew all the things that could be problems with a cf baby and wanted to be prepared. unfortunately, i don't think anyone can answer this for you. you just have to discuss it with your dp and come to a decision that is right for you two.

[bryonyvaughn]

One other possibility is to tell your doctor how knowing you're a CF carrier is bothering you an not knowing your dp's status is really nagging at you. You can explain how dp doesn't have insurance and the hospitals and labs won't quote you a price. You can then say since you're so anxious about this you'd like a retest at the lab to see if the first test was a false positive... and instead of ordering the test under my full name could you order it under my first initial and last name? :

Lots of doctors are frustrated with insurance companies and the plight of the uninsured that, so long as they themselves aren't committing insurance fraud and have a cover of plausible deniability, they will do a little something to help someone out.

~BV

[ShannaW]

It is sooooooo not too late to switch to a midwife. Or another doctor for that matter! Not all doctors order up the 'check list' of tests (though it seems many do) automatically. Mine are almost against testing, honestly.

Before we do any testing I #1 verify that it does not endanger the baby in any way shape or form and #2 generally decline it anyway b/c the results would make ZERO difference to DH and I as we would not terminate a pregnancy for any reason (outside of say an etopic which obviously is life-threatening). So the test results would do nothing but add undue stress and worry to the rest of the pregnancy. But you may feel like knowing there's a 25% chance will give you the time to digest the possibility and learn as much as possible about raising a child w/ cf.

btw, when the NP went over this screening option with us she explained that the level of severity differs drastically among individuals such that, we could even meet someone w/ cf and never even know it / not be able to tell physically. We declined anyway, b/c of the above mentioned reasoning.

(HUGS) to you!

[tallmomma]

if you do opt for further testing, i would push for it to be done through ambry genetics or quest diagnostics. these are the only 2 labs that test for over 1300+ known mutations of the cf gene. even then, there is always the possibility of someone carrying a gene that has not been identified yet (more continue to be discovered). the chances of someone being a carrier are lowered definitely with a full panel ambry or quest, but the possibility will still remain. while these labs are the best,no test is 100%. that being said, all other labs only test for a very small # of what they deem the most common mutations, which is an even greater false sense of security.
imho, if you plan on having your baby regardless, then i wouldn't waste my time, money, but just try my best to enjoy every minute of your miracle in the making! cf is a complex condition, but don't let the literature freak you out too much. there is such a wide spectrum of severity and not everyone has textbook symptoms. and if the worst came true, there is so much promise with the treatments and advancements that we have today. anyway, hang in there...chances are that your baby is just fine! we'll be praying for your little one!