Feeling defeated (apologize in advance for the longish post) - Mothering Forums

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#1 of 8 Old 09-02-2012, 07:06 AM - Thread Starter
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On Friday I received a call from the OB.   My NT scan looked fine, but the blood work returned a 1:5 likelihood for Down Syndrome.  I was so stunned that I didn't ask for the specific numbers (not that I would have known what to ask for right then), but I'll find out at our genetic counseling session on Tuesday.   I am 38 years old, 14 weeks along with our second.


I understand that screens are not fail proof and that the only definitive way to know if the baby has a genetic issue is to do an amnio; I'm fine that doing it now.  I know many mamas here would be happy with a DS baby.  For personal reasons though, DH and I decided we would not continue should the amnio results be positive. 


With DD, after we saw an early HB at 7 weeks at my OB/GYN's office, I switched over to a homebirth midwife practice.  The rest of the pregnancy was smooth, and we birthed our daughter at home.  I was 36.


When I found out we were expecting again this January, I thought I would get the initial appointments done at a local OB office first, then switch over to our midwife.  Convenience and proximity were the deciding factors, mainly because my midwife's practice is a 2 hour round-trip drive and my toddler doesn't do well in long car rides.  I thought I was being pragmatic.



Unfortunately I've come to expect only bad news whenever I visit the OB.  First the excruciatingly long office waits: my first visit wait was 3 hours, and subsequent visits are typically 90 minutes of waiting. Then the parade of bad news: not finding a heart beat at 9+ weeks, a hard miscarriage at 11 weeks, an emergency D&C.  


In June I (foolishly?) went back to the OB practice to confirm our current pregnancy.  After not finding a gestational sac and early spotting, with the doctor unable to provide any explanation, I got sick of doing nothing and sought an acupuncturist.  The spotting stopped after 10 days of treatment, and we saw a heart beat, yolk sac, etc.  I remember the OB looking visibly relieved.  I never told him about the acupuncturist.  


Again, I was hoping to reach the 12 week mark and receive the all-clear from the NT scans to switch over to our midwife.  Which leads me back to the beginning of this post, where we are now.


My husband has had it with this OB's practice: the long waits, the many appointments, the litany of doom and gloom. DH wants us to switch providers, even seek out another practitioner to do the amnio.  We will go to the genetic counseling because it's scheduled for Tuesday, and I doubt we can find another genetic counselor who is available before then.  To add insult to injury, my husband's company made an egregious error in our insurance paperwork in which I was suddenly dropped from his policy mid-year.  I'm waiting to be reinstated, but I don't know when that will be; hopefully very soon.


Sadly, I feel like I've given up hope for this p/g.  Yesterday I realized I've gone a few days without taking my prenatal pills, likely because I've been so distracted.  I've been ordering a lot of takeout for the family because I just don't feel like cooking (typically I enjoy it).  DD is such a delight and I am deeply grateful to stay home with her, yet I'm unable to give her the attention and joy that she deserves because I'm so emotionally and physically tired.  


I'm sorry for casting such a dark shadow on what should be a very happy period.  I need to pull myself out of this, for my sake and the sake of my family.  Any advice and help would be so appreciated.  Thanks in advance.

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#2 of 8 Old 09-02-2012, 09:49 AM
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hug2.gif First of all, one in 5 chance, is still only a 20% chance, 80% chance that the baby is just fine- and your baby's scan was great. Let's not jump the gun here. The NT scan pretty high detection rates as far as just the numbers of the measurments.


You think OB sucks- find a new one. Personally, if it was me I'd find a high risk practice to do the amnio. If the doctor couldnt give you any answers about spotting or run a decent schedule do you really trust him to stick a needle in your belly?


Remember this, your choice to terminate if the results are positive is your choice. You may not get a lot of support for that choice here or anywhere else, but just keep that in mind. I'd likely make the same decision.


You don't have to make all the decisions right now. Right now, all you have to make a decision about is where to go to get an amnio. That's the only decision in front of you. If the results are negative, then call your homebirth midwife. If you are worried about being higher risk, go ahead and have her order an ultrasound for your 20 week mark if you are wanting to make sure that everything is okay. These decisions look so hard from the inside. But remember, until you know the results of the amnio, you only have the one decision to make.


As far as insurance goes, if they are the one's who mistakenly took you off the policy, then they should backdate your coverage and reimburse you for all of this.


Don't stress yourself out so much. Make some phone calls, and find a new OB, because right now that is the only thing you have control over. When you make those phone calls, as how many amnios they regularly do, how long you should anticipate office visits taking, and if you will get a one on one meeting with the doctor after the procedure to discuss your options.

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#3 of 8 Old 09-02-2012, 10:10 AM
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I agree with Adaline's Mama.  It sounds like you need to take things one step at a time.  If you're not comfortable with your current OB (and the wait times alone would make me switch practices), I would go ahead and switch.  To defend the OB on the other charges, however, it sounds to me like the practice is taking blame for things that are not really in their control.  Spotting in early pregnancy is very common and has a wide variety of causes.  It's not unusual for doctors to not be able to explain early spotting, just like most doctors can't explain most early miscarriages.  And similarly, for your miscarriage and so on, the OB is not to blame.  At the same time, I could totally understand having negative enough associations with the office (particularly because it doesn't appear they show patients much respect) that you wouldn't want them to continue your care.  And that is totally up to you.  I would push through with the amnio at another provider, since it doesn't sound like you have the trust you need with this one.  And to repeat was AM said above: there's a very good change your child does not have DS at all.  But you need answers before you get overwhelmed thinking about variables over which you have no control. 

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#4 of 8 Old 09-02-2012, 10:30 AM - Thread Starter
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Thank you both - Adaline's Mama, and LilyTiger, for responding and offering your clear-headed, actionable advice.   LilyTiger: thank you for putting into words how I feel about the clinic.  I certainly don't blame the OB for the miscarriage, and I understand that there may be many reasons for early spotting.  While I actually like the OB himself, I've just had too many negative associations from my experiences with the practice.


You are right:  the only thing I can control right now is where to get the amnio.   I've contacted my midwife to see if she has any recommendations, then go from there. 


Thank you again.  

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#5 of 8 Old 09-02-2012, 10:48 AM
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hugs , you have the right to take care of yourself, your body, your family and your soul.  i hope you get more clarity soon and if things are no panning out the way they need to be i hope you have the calm you need to make those choices with just you and your partner and can blot out the other unwelcome voices.  you have my support, no matter what.

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#6 of 8 Old 09-02-2012, 01:36 PM
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The testing can be so stressful. On another board a friend posted a reply when someone asked about the pro's and con's of doing the nuchal testing, I thought I would copy it for you here.


I had it done with my first child and the results came back high risk. So then I had more testing done and even more markers appeared. Saw a specialist met with a genetic counselor, more red flags. In the end we had the amnio so we could be prepared. Scariest weeks of the pregnancy! He is fine but we were down to a one in twenty chance that he would have downs.


Her son does not have Down's, even though all of the early results were leaning towards it. I thought you might like to hear that from someone who has been there. Hope your midwife is able to help you get some answers.

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#7 of 8 Old 09-02-2012, 04:39 PM
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You have gotten some great replies!


I just want to add that I know personally and have heard of several other cases where there were high odds (1 in 8, 1 in 10, etc.) for Downs, and in all of the cases I know of, everything turned out to be fine. As PP said, your only next step is to get the true answer you need in order to either bond with your pregnancy or move on, through the amnio. I hope you can get it as soon as possible, and in the meantime, perhaps you can try positive recitations. For me, the best way to deal with these things is to assume the best until I'm proven wrong.

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#8 of 8 Old 09-06-2012, 02:51 PM
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I can't imagine what you are going through. I'm so sorry.


Take comfort in your family. Extra hugs and attention for your daughter with make you emotionally stronger and will help her to feel better as well. Children are extremely intuitive and it's likely she is feeling your stress, even if she doesn't understand it.

Best of luck to you and your family.

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