xxMichellexx
Test results and reactions by medical profession :(
June 14, 2012 at 1:14 AM

A little bit of basic information... I am due to have baby number 5 in december and the pregnancy was a complete suprise and unplanned... I am 42 so am immediatly classed as 'high risk' anyway because of my age alone...

I had a hospital appointment on Tuesday, and the Midwife left me feeling guilty, upset, scared and very angry... I have a 1 in 11 chance of having a child with Down syndrome because the blood test came back positive.. The ultrasound was excellent and the fluid behind the neck was the right amount, so there is no definant diagnoses at the moment...

I was treated as if there has been a diagnosis and was told by the Midwife, to have an amniosentisies, and to terminate... She didnt even say 'if the amnio results come back for DS to terminate'...That i have 4 healthy children already and that given that i am 42, what happens when i am no longer here... She never asked me what i had planned to do, or what my thoughts were, she told me what i should do... Nor did she ask me what my hubby wanted me to do, or his thoughts either...

Hubby and i have decided that we are not going to have a amnio because of the risks, and that we will love our baby regardless... That we are leaving this in Gods hands and will work together and face whatever comes our way...

Medical professionals need to be more aware of how they approach telling a mother they are 'high risk' and give some hope, rather than making a desicion for them based on a blood test result,  even before there is an exact diagnosis...

 

Replies

  • TTC2Long
    June 14, 2012 at 1:38 AM
    Holy Jeeze. That's some cold shit. 1 in 11 chance the baby WILL have Downs means 10 out of 11 chance it WON'T. Never go back to her again, for sure. I'd look into reporting her.
  • Beyondthesky37
    June 14, 2012 at 1:44 AM

     

     

     

    My three year old son has Down Syndrome so if you have any questions feel free to PM me. But I also thought you would benefit from what I copied below.  It was posted to a Down Syndrome group here on cafemom and I thought it might help.

     

    I am a biologist and college professor, at 19weeks pregnant in 2011, I got a PHONE CALL from my doctor's nurse telling me my child had DS. I asked how they knew and was told they had done a quad screen blood test and that he had DS. She said the actual number was 1:15 but that I was positive and it was not likely that he would not have DS.

    Luckily I am a scientist or I would have completely lost it. I thought about this for a moment and realized that 1:15 is only a 7% chance, so how exactly was that a "positive" for anything? I did research and found that there is no such thing as a postive or negative screen (of any form) for DS, althought this is how many doctors are reporting it to parents, many of whom are terrified and make rash decisions based on this information.

    I was FURIOUS! If not for my background, I would have felt both hopeless and helpless. As an adoptee myself, abortion is not an option I support, and knowing that I have the means and ability to care for a special needs child, I knew that this was something that I could handle, but I knew that part of the story was missing.

    We were pushed to have an amnio but I requested a Level II ultrasound be done at UAB's Genetic Research Facility (one of the leading in the country). The level II showed no soft tissue markers, so I was not sure whether he would or would not have DS (you can have it and have no soft tissue markers show on Ultrasound). You need to ask about the credentials of your ultrasound specialist when you have this done and at least a portion of it should be done by an MD who is a genetic specialist, not just by a nurse and reviewed by a general OB/G.

    I did not want to risk miscarriage, infection, or other injury to my baby through the amnio because we wanted him no matter what. The risk differs based on where you have it done so check that as well. Many places the risk is 1/200, at UAB the risk is 1/600.

    What I want parents to take out of this is that there is no positive or negative test for DS. When people talk about "false positives" on quad/tri/other screen tests, they are being misinformed because these tests simply indicate a possible risk of Trisomy 13, 18, or 21 and cannot be used to give you a positive or negative for any of those disorders.

  • Beyondthesky37
    June 14, 2012 at 1:48 AM

     

    Quoting TTC2Long:

    Holy Jeeze. That's some cold shit. 1 in 11 chance the baby WILL have Downs means 10 out of 11 chance it WON'T. Never go back to her again, for sure. I'd look into reporting her.


    I have a son with Down Syndrome and belong to several advocacy/ support groups for Down Syndrome.  Unfortunately this is the most common way health care providers handle telling parents their children may have Down Syndrome.  This is one of the reasons believed to contribute to the 90% abortion rate of children with a prenatal diagnosis of Down Syndrome.  I've heard so many stories similar to the OP's it's awful.  There seems to be a lacking of compassion by most medical professionals when it comes to diagnosing Down Syndrome prenatally.  I'm sorry your midwife is like this as well.

  • amiesmomma
    June 14, 2012 at 1:52 AM

    THIS!!!!!  Medical professionals (and related service providers) need to know what they are saying before they speak.  a screening is not a diagnosis. Here is some more info

     http://www.americanpregnancy.org/prenataltesting/quadscreen.html 

    GL and God Bless.  


    Quoting Beyondthesky37:




    My three year old son has Down Syndrome so if you have any questions feel free to PM me. But I also thought you would benefit from what I copied below.  It was posted to a Down Syndrome group here on cafemom and I thought it might help.


    I am a biologist and college professor, at 19weeks pregnant in 2011, I got a PHONE CALL from my doctor's nurse telling me my child had DS. I asked how they knew and was told they had done a quad screen blood test and that he had DS. She said the actual number was 1:15 but that I was positive and it was not likely that he would not have DS.

    Luckily I am a scientist or I would have completely lost it. I thought about this for a moment and realized that 1:15 is only a 7% chance, so how exactly was that a "positive" for anything? I did research and found that there is no such thing as a postive or negative screen (of any form) for DS, althought this is how many doctors are reporting it to parents, many of whom are terrified and make rash decisions based on this information.

    I was FURIOUS! If not for my background, I would have felt both hopeless and helpless. As an adoptee myself, abortion is not an option I support, and knowing that I have the means and ability to care for a special needs child, I knew that this was something that I could handle, but I knew that part of the story was missing.

    We were pushed to have an amnio but I requested a Level II ultrasound be done at UAB's Genetic Research Facility (one of the leading in the country). The level II showed no soft tissue markers, so I was not sure whether he would or would not have DS (you can have it and have no soft tissue markers show on Ultrasound). You need to ask about the credentials of your ultrasound specialist when you have this done and at least a portion of it should be done by an MD who is a genetic specialist, not just by a nurse and reviewed by a general OB/G.

    I did not want to risk miscarriage, infection, or other injury to my baby through the amnio because we wanted him no matter what. The risk differs based on where you have it done so check that as well. Many places the risk is 1/200, at UAB the risk is 1/600.

    What I want parents to take out of this is that there is no positive or negative test for DS. When people talk about "false positives" on quad/tri/other screen tests, they are being misinformed because these tests simply indicate a possible risk of Trisomy 13, 18, or 21 and cannot be used to give you a positive or negative for any of those disorders.


  • lovefromwithin
    June 14, 2012 at 1:55 AM

    I would definitely change midwives. I believe a higher force wouldn't give you something you can't handle. :)

  • first.time.momy
    June 14, 2012 at 1:58 AM
    Omg! That is awful! I would switch care providers if possible. Congrats on your pregnancy! :)
  • Devious103102
    June 14, 2012 at 2:04 AM

    1-those blood tests are crap. I know a TON of people who came up with false positives. They were told their babies would have DS or any other number of issues and all were born perfectly healthy!  Don't allow them to make you feel like crap.

  • ashlee62982
    June 14, 2012 at 3:41 AM
    Im sorry they would do that to you...and i think you and your dh chose the right thing.
    we were told at my 20 week appt that my dd didnt have any brain growing, that she would have no quality of life and wouldnt liive to term and if she did she wouldnt live long after. The doctor (who is a high risk specialist) advised termination, he was insistant that things would not change and there was no hope for her.
    im happy to say, we decided to let nature take its course, and while we would be devestaded if we'd have lost her at least we did everything we could for her...and i figured an hour would be better than nothing and maybe we could donate her organs to help someone else. That was the single hardest few weeks of my life...now she is 4 months old and near perfect. She has severe hydrocephalus, and seizures but aside from her head being too big for her to hold up, and out of porportion with her body...and the shunt that does keep her alive you would never know. She is perfect. I know its not the same, except for the punch in the gut when you get bad news compounded by a jerkwad dr telling you to just terminate. *hugs* pm me if ya wanna talk.
    you can read all of Miss Tays story here www.gofundme.com/misstay
  • tginn20
    by tginn20
    June 14, 2012 at 7:44 AM

    Stand your ground Momma and get a new midwife/ doctor!!!

    I opt out of those tests bc I went thru the stress of thinking my son had a 1 in 4 chance of having CF bc I was a carrier and the doc assumed that my DH was too bc his 1st cousin has CF. After the longest/ most stressful 12 weeks ever...it came back that he indeed wasn't a carrier (which baffled docs bc it is almost unheard of) After that, DH and I decided that any and all genetic/ screening tests weren't going to happen during any pregnancy. It's not worth the stress. If God chooses us to have these babies (regardless if they have issues or not) we will take it bc we know that He will not give us anything we can't handle. 

    GL Momma!

  • nickigoingon8
    June 14, 2012 at 7:57 AM

    I talked to a geneticist because my youngest son has duplications in a chromosome and she said that the blood test for downs is only about 70 percent accurate. If the ultrasound isn't showing any abnormalities I would try not to worry about it...after those comments though, I think I would be finding a new caregiver for yourself. Good Luck and I hope everything turns out ok....by the way there is a more specific test you can get done for downs that is 85 percent accurate, but you need to find a geneticist to get it done and only have until you are 16 weeks. At least, that could put your mind at ease.

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