Ultrasound Results (FINALLY) - Yet another update in message #23 - Mothering Forums

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#1 of 34 Old 07-17-2007, 08:10 PM - Thread Starter
 
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Background: I've had a LOT of spotting, so my midwife sent me for an u/s at 11w. My family doc's (who I am NOT seeing for the pregnancy) office called Friday, saying I needed to come in to discuss the u/s results, but wouldn't give me any info over the phone. I asked that the doc call me. I left a message for my midwife, but her office hours are only on Tues and Thurs, so she didn't get back to me until today either.

My doctor finally called today around lunch. There was increased nucal folds at the back of the neck, which means an increased risk of Down's Syndrome. Her office is calling to make me an appointment ASAP at BC Women's Hospital to have a more in-depth u/s done, which will be reviewed by a perinatologist.

The hospital where I had the original u/s done at 11w never sent the results to my midwife. They are supposed to page her right away if there are any results to be concerned about, but they didn't. If they had, I probably would have an appointment today or tomorrow already. Needless to say, she had a bit of a "chat" with the hospital staff.

I called dh right away and when I told him it was the only time in the 7 years I've known him that he was actually speechless. I don't really know what to think right now. We've got lots to learn and to think about right now. I'll keep you all posted when I know more.
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#2 of 34 Old 07-17-2007, 08:33 PM
 
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I just wanted to send you some peaceful vibes! I was hoping for an update but I was hoping somebody was just being a jerk and not making the stress worse. Whatever happens you will be just fine mama!

Did they say what the rate of incorrect scans were? Is your midwife in the loop now? Will your dh be able to go with you for the next scan,if not him a friend?

Drink a cup of tea, take a bath, get a massage, whatever but try real hard to be good to yourself. I am a worrier and I would also be ticked that the drs office messed around like that. Good for your mw for giving them an earful btw, she sounds cool.
Angela
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#3 of 34 Old 07-17-2007, 09:47 PM
 
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I hope this is one of the times when u/s is wrong.

Sandy, proud mama and henna artist. :
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#4 of 34 Old 07-17-2007, 10:02 PM
 
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Originally Posted by AngelaB View Post
Did they say what the rate of incorrect scans were?

I believe there is a 5% false-positive rate with NT scans. That means that 5% are in fact not affected. The next scan will probably be able to give you more accurate information.

Mama_Bear, I hope you manage to stay strong and not worry to much about this. Think about it yes, but don't worry about it, not now.

lots of aloha,
Kristin

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#5 of 34 Old 07-18-2007, 08:36 AM
 
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Also, I think the false negative/positive rate varies with the tech. Those with less experience and training can have a much higher false negative/positive.

Sandy, proud mama and henna artist. :
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#6 of 34 Old 07-18-2007, 09:17 AM
 
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I agree with the person who said to just take good care of yourself- massage, relax. I know plenty of people who have had false scans and a lot of needless worry. Hang in there mamma!

Wife to my Denali-climbing DH
Mom to DD born Jan. 08 and DS born Oct. 09, and "baby sister" due Oct 2013!
House mom to ten boys, ages 8-11 at a group home! Yes, I must be nuts!
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#7 of 34 Old 07-18-2007, 12:55 PM
 
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Hugs to you
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#8 of 34 Old 07-18-2007, 02:51 PM
 
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I hope everything works out I agree, try your best not to stress too much right now. Let us know how it goes.

Mama to Boy (10) Other Boy (7) and Girl (4)   mdcblog5.gif in my profile!

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#9 of 34 Old 07-18-2007, 08:40 PM - Thread Starter
 
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Thank you so much, girls. I can't tell you how much a few positive messages from strangers really helped lift my spirit.

It's funny, I thought I would be more upset about this, but I'm not. It's not like this is a fatal diagnosis. We'd still have our baby, it would just be different.

Remind to keep that same attitude later on though.
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#10 of 34 Old 07-18-2007, 08:48 PM
 
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mamabear. I've been thinking about you! Please keep us posted and know that you will be in our thoughts

~e, wife to my sweet T partners.gif, mama to my turtleman (8) , sunshine (6 vbac.gif), and monkey (2)
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#11 of 34 Old 07-19-2007, 12:52 AM
 
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Hugs. I hope everything turns out fine.

Bobbi, wife to dh love.gif and mom to dd1 (6-6-04) blahblah.gif, ds (4-1-06) nut.gif, and dd2 (1-18-08) flower.gif. Welcoming our newest ds babyboy.gif (11-24-10)!
 
 
 
 
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#12 of 34 Old 07-19-2007, 03:37 PM
 
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If you are faced with a child with special needs, let me tell you they add spice to life!!!!
My son has autism and is non verbal. Its hard some days and it was the hardest at first but he is delightful all the same! As i have had some time to look back on his life so far and I realised that he was meant to be my child as with all my children!
Take care and keep us posted and keep reminding yourself that everything will turn out just fine!
Angela
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#13 of 34 Old 07-19-2007, 05:06 PM
 
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mamabear, I just wanted to send you some positive vibes. I think Down's children are very special little people, and even if it is a disability I know you can handle it if it is to be for you. God bless and take care.
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#14 of 34 Old 07-19-2007, 06:14 PM - Thread Starter
 
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I still don't have an appointment at the Women's hospital. I called my doctor's office yesterday and today. My doctor's office didn't know why they hadn't heard back, so I called my midwife and she called the hospital. The hospital needs to see the original u/s, and doesn't think that this is necessarily a "true finding". My midwife arranged for the original hospital to send the u/s results this afternoon and the Women's hospital will review it and decide if I even need to come in. I may not hear until Monday, though.

I'm loving my midwife more and more this week. First she called the original hospital to give them "a stern talking to" about not paging her with the results or even sending her the results, and now she actually gets answers from BC Women's hospital when my doctor's receptionist seemed unwilling and unable to do.

Thanks again for all the positive thoughts, well wishes, and prayers.
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#15 of 34 Old 07-19-2007, 08:12 PM
 
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Mamabear, it must be frustrating that it's taking this long to get any answers
Your midwife sounds like a very competent, get-things-done sort of person, though, so hopefully you'll get somewhere soon. Good luck

~e, wife to my sweet T partners.gif, mama to my turtleman (8) , sunshine (6 vbac.gif), and monkey (2)
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#16 of 34 Old 07-19-2007, 09:55 PM
 
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I'm so glad you have a great midwife! Hope things work out mama!

Wife to my Denali-climbing DH
Mom to DD born Jan. 08 and DS born Oct. 09, and "baby sister" due Oct 2013!
House mom to ten boys, ages 8-11 at a group home! Yes, I must be nuts!
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#17 of 34 Old 07-19-2007, 10:39 PM
 
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Hang in there until Monday. Glad to hear your midwife is on this now.

wash.gif  Me  + bikenew.gif Dh =  broc1.gif  Dd1(9 yrs) + hearts.gif  Dd2(6 yrs) and blowkiss.gif Ds(3.5 yrs)
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#18 of 34 Old 07-19-2007, 10:40 PM
 
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sending good thoughts your way! i'm glad you have a good midwife, as well.
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#19 of 34 Old 07-19-2007, 10:45 PM
 
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While it could possibly be true, most likely it's a false sign of DS. That's becoming more and more likely these days on u/s. "They" think perhaps it's because u/s is better than ever and therefore catching things that they used to feel weren't as common.

I hope everything settles and turns out okay but I can tell you a lot of MDC mamas will say they'd had the same thing and it all turned out okay! Seems like the trend is the u/s NOT catching things and instead giving false positives.

Almost a b-ball team: : Taylor -14, Alex -11, Jack -8, Lachlan born at home 11/15/07
"Well behaved women rarely make history"
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#20 of 34 Old 07-20-2007, 11:47 AM
 
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Yuck, I'm sorry your on this emotional roller coaster. I really hope you can get some definitive answers soon, if only to get a little peace. (((Hugs)))
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#21 of 34 Old 07-20-2007, 05:40 PM
 
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Popping in from the December DDC, my oldest son had that increased folds at the back of his neck as well, and the AFP test came back positive, we pretty much did all the testing we could to see if he would be a downs baby and they all came back positive. We were totally prepared for a downs baby when he was born and now at 5 yrs he doesn't show a sign of downs or any handicap for that matter. False positives are so high on these tests. I'll be following your story and hope things work out for the best. I truely believe children with disabilities come into certain peoples lives for a reason and are hand picked to parent them.

Aimee Blessed Momma to 4 amazing boys, P ~ 9 H ~ 7 J ~ 4 and B ~ 1.  Happily married to D Living my almost dream life on an urban homestead, hoping for our forever land to find us soon!

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#22 of 34 Old 07-20-2007, 09:55 PM
 
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Quote:
Originally Posted by Momma2DoubleCuties View Post
Popping in from the December DDC, my oldest son had that increased folds at the back of his neck as well, and the AFP test came back positive, we pretty much did all the testing we could to see if he would be a downs baby and they all came back positive. We were totally prepared for a downs baby when he was born and now at 5 yrs he doesn't show a sign of downs or any handicap for that matter. False positives are so high on these tests. I'll be following your story and hope things work out for the best. I truely believe children with disabilities come into certain peoples lives for a reason and are hand picked to parent them.
Great post! Thanks for sharing your story!

Kristin

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#23 of 34 Old 07-26-2007, 09:07 PM - Thread Starter
 
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We FINALLY have some real news. It turns out that it was all a false alarm. Baby seems to be fine. We've decided to get the triple screen done and will have the technician look really closely at the big u/s on Aug 30. I was given a lot of "I've done everything I'm supposed to, I can't help you", "we're still waiting for results", "it's not my problem" in the last week. Offices weren't talking to each other, my original scans weren't being sent - it was unbelievably frustrating! My midwives are looking into the reasons why this was such an ordeal, and are writing complaint letters to the head of radiology of both the original hospital and the health region, as are dh and I.

Anyways, the results were false, because the technician wasn't trained to do nuchal translucency (sp?) measurements and she did them wrong. The baby must be between 45 and 80mm (crown to rump), and my baby was only 40mm - right there that nullifies everything. Technicians need to zoom in to make measurements and she never did. Nuchal folds greater than 3mm are markers for Down's Syndrome. My baby's folds were only 2.7mm and they rounded the measurement up - a big no-no. The medical geneticist at the Women's hospital took a look at the scans and said everything looks fine.

So now we breath a sigh of relief and thankfulness. An annoyed sigh, but a relieved and thankful sigh nonetheless. Thanks again for all the positive vibes/thoughts/prayers.
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#24 of 34 Old 07-26-2007, 09:23 PM
 
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Oh that is wonderful news!! You must be so so happy!!

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#25 of 34 Old 07-26-2007, 09:35 PM
 
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wow! what a relief to have some information and not still be getting the run around. i bet that you are feeling much better. i wish they could realize what they had put you threw.
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#26 of 34 Old 07-26-2007, 09:59 PM
 
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That is great news for you! I would imagine it feels so good right now, to not have to worry about that anymore. Thanks for the update!

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#27 of 34 Old 07-26-2007, 10:33 PM
 
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PHEW!!! What a relief. Grrr to the poorly trained technician. GRRR.

wash.gif  Me  + bikenew.gif Dh =  broc1.gif  Dd1(9 yrs) + hearts.gif  Dd2(6 yrs) and blowkiss.gif Ds(3.5 yrs)
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#28 of 34 Old 07-26-2007, 10:53 PM
 
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wonderful, mama bear!

Jenn, wife to John
Mama to Kayleigh (6), Ethan (4), Norah (1), & Charlotte coming 11.09
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#29 of 34 Old 07-27-2007, 08:19 AM
 
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Great news!!! Sorry you had such a frustrating and worrying experience though


I really hope that tech does not preform the test again with out the proper training.

Sandy, proud mama and henna artist. :
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#30 of 34 Old 07-27-2007, 10:47 AM
 
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What great news.

Frugal, food growing mama to my four loves

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