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    Find out what other moms-to-be are asking. Join in the discussion with Henci Goer, whose expertise is determining what the research tells us best promotes safe, healthy birth. If you would like to contact Henci outside of the Ask Henci forum, send an email to Goersitemail@aol.com.

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    May 23
    2007

    Questions on Trisomy 18 screen/gestational diabetes testing

    Archived User

    Dear Henci,

     I am in my 9th pregnancy (hopefully to have my 6th born).  I have a few questions with screening results and also three hour glucose testing. 

    First of all, I have received a positive screen result for trisomy 18.  I have had sonograms showing no problems, and since I will not terminate, my peri all but refused amnio.  I am in limbo land on this and hope to still receive good care for my baby despite not knowing if there is a chromosomal problem.  Actually, I feel my baby may get better care at this time if born with an abnormality because the hospital won’t try to refuse “heroic measures” because of a poor prenatal diagnosis.  Not knowing is hard, researching articles has suggested such a screen result most likely doesn’t mean my baby has trisomy 18, but it does put the baby at risk for other complications.  One study I read cited a 30-40% chance of an “abnormal” pregnancy outcome including fetal death, trisomy 18, trisomy 13, trisomy 21, Turner’s syndrome, placental sultifase deficiency, triploidy, and others.  My basic question is, is there an advantage to having an amnio and knowing for sure?  Is there an advantage to not having amnio and figuring it all out later?

     I am also scheduled for the 3 hour glucose test (fast/take in high sugar/blood work for 3 hours).  I am wondering if it is better to schedule this earlier than later?  I was given the paperwork and can schedule this for myself.  I am at 24 weeks today, and wonder if I should schedule earlier in order to get a chance for a better result than waiting until 28 weeks (when my OB suggested I do this).  Basically, is earlier better? 

     Thank you for your consideration.  I read your article on gestational diabetes, and it didn’t actually suggest a week that might glean the best result and avoid a false positive on this the glucose test.  I have been studying up on trisomy 18, but have found very little in the “alternative” and midwife world about screening results and opinion on amnio.

     Blessings!

    Dawn

    Henci Goer

    I have put my responses in red.

     

    I am in my 9th pregnancy (hopefully to have my 6th born).  I have a few questions with screening results and also three hour glucose testing. 

    First of all, I have received a positive screen result for trisomy 18.  I have had sonograms showing no problems, and since I will not terminate, my peri all but refused amnio.  I am in limbo land on this and hope to still receive good care for my baby despite not knowing if there is a chromosomal problem.  Actually, I feel my baby may get better care at this time if born with an abnormality because the hospital won’t try to refuse “heroic measures” because of a poor prenatal diagnosis.  Not knowing is hard, researching articles has suggested such a screen result most likely doesn’t mean my baby has trisomy 18, but it does put the baby at risk for other complications.  One study I read cited a 30-40% chance of an “abnormal” pregnancy outcome including fetal death, trisomy 18, trisomy 13, trisomy 21, Turner’s syndrome, placental sultifase deficiency, triploidy, and others.  My basic question is, is there an advantage to having an amnio and knowing for sure?  Is there an advantage to not having amnio and figuring it all out later?

     

    Let me start by saying I'm sorry you have had this news. It must be very distressing for you and your family. In answer to your question, if you would not terminate the pregnancy, then the main reason for having an amniocentesis disappears, and I see a reason not to have one:  There is a slight chance that the procedure could cause a miscarriage, which means you could lose a healthy baby. What is more, if your baby does, indeed, have an inborn genetic problem, your baby is at higher risk of miscarrying spontaneously. If you have the amniocentesis and a miscarriage occurs, you won’t know if choosing to have the procedure caused the loss. The only advantage that I have heard for a woman who will not terminate the pregnancy having an amniocentesis is so that medical staff can be prepared at the birth. But another way to address the possibility that your baby may need special care immediately is to have your baby at a hospital capable of providing such care if necessary 24/7. That would be a hospital with in-house pediatric staff and a neonatal intensive care unit. Then foreknowledge of the baby’s condition wouldn’t matter. Thinking about it more, I do see one reason you may wish to have an amniocentesis: to end the stress and anxiety of not knowing. I also wonder if you have an alternative for getting more information about your baby noninvasively:  Ultrasound technology has advanced to the point where doctors can get extremely detailed images of the unborn baby. If you had a high-level sonogram, could the baby’s appearance reassure or confirm the presence of genetic abnormality?

     

    I am also scheduled for the 3 hour glucose test (fast/take in high sugar/blood work for 3 hours).  I am wondering if it is better to schedule this earlier than later?  I was given the paperwork and can schedule this for myself.  I am at 24 weeks today, and wonder if I should schedule earlier in order to get a chance for a better result than waiting until 28 weeks (when my OB suggested I do this).  Basically, is earlier better? 

     

    Yes, earlier is better than later. Blood sugar levels normally rise as the pregnancy continues, but the thresholds are based on averages over the third trimester. Therefore, you are more likely to “pass” if you have the test early in the third trimester.

     

    Thank you for your consideration.  I read your article on gestational diabetes, and it didn’t actually suggest a week that might glean the best result and avoid a false positive on this the glucose test.  I have been studying up on trisomy 18, but have found very little in the “alternative” and midwife world about screening results and opinion on amnio.

     

    If you read my article, you will know that the Oral Glucose Tolerance Test is neither a reproducible nor a reliable test. You will also know that values for diagnosing gestational diabetes are arbitrary. They do not represent thresholds after which complications either begin occurring or increase markedly. As I have said before, if all that happened was that a woman with what, in most cases, should be called “glucose intolerance of pregnancy,” not true diabetes, was counseled to be extra careful to eat a diet high in fruits and veggies and moderate in fat, to avoid junk food, and to exercise regularly, I think screening would be a great thing. It would also be a good thing to pick up the few women who test as true diabetics. Unfortunately, the diagnosis labels women as “high-risk” and subjects them to high-stress, high-anxiety pregnancies and a much higher rate of medical interventions that have the potential to do them and their babies far more harm then running somewhat high blood sugars during the last trimester of the pregnancy.

     

    -- Henci

     

    Blessings!

    Dawn

     

    Archived User

    Thank you, Henci.

    With the amnio, it also prepares the parents for a terminal baby, I do know this much.  It allows for her family to be near, and for "Now I Lay Me Down to Sleep" photographers to be there.  I do know she can write a birth plan based on this information.

    The disadvantage of miscarriage from amnio is a good reason to not do it.  No one tells women if they've had bleeding in pregnancy or are overweight, amnio is more likely to cause problems.  Also, previous miscarriages add to the risk (I've at least read that somewhere).  Your assesment makes sense. 

    Thank you for the information on gestational diabetes testing.  The three hour test is what I go for directly because I tend to fail the 1 hour.  Interstingly, last time, I had a high value in the first hour of the three hour test too...but you have to have two values off to be labeled high risk because of testing.  I will take the test earlier than later.

    Blessings!

    Dawn

    Henci Goer
    Posted By n/a on 05/25/2007 12:34 PM

    Thank you, Henci.

    With the amnio, it also prepares the parents for a terminal baby, I do know this much.  It allows for her family to be near, and for "Now I Lay Me Down to Sleep" photographers to be there.  I do know she can write a birth plan based on this information.

    That is an aspect I had not thought of that might be important to some people.

    The disadvantage of miscarriage from amnio is a good reason to not do it.  No one tells women if they've had bleeding in pregnancy or are overweight, amnio is more likely to cause problems.  Also, previous miscarriages add to the risk (I've at least read that somewhere).  Your assesment makes sense.

    I didn't know these things. Thanks for the info. Don't get me wrong, though, the likelihood of the amniocentesis causing a miscarriage is very small.  

    Thank you for the information on gestational diabetes testing.  The three hour test is what I go for directly because I tend to fail the 1 hour.  Interstingly, last time, I had a high value in the first hour of the three hour test too...but you have to have two values off to be labeled high risk because of testing.  I will take the test earlier than later.

    I hope all goes well with you in all aspects of this pregnancy.

    -- Henci

    Blessings!

    Dawn



    Archived User

    Henci,

    I didn't update, but I had my baby Sept. 13, 2007.  She is a healthy girl, no problems at all.  Thank you for responding here.

    I did have a horrible experience during labor though as I had a very young nurse who did everything by the hospital birth.  I had hoped to go "natural" and didn't get pain medication, but due to the nurse putting me on my back to check my cervix, I had either the baby move away from the monitor and my heartbeat was being picked up or baby was having a decel probably due to me being flat on my back and my blood supply being compromised to the baby.  When placed on my side, the heartrate didn't come back up. I saw it was 80bpm on that machine, and I thought maybe if I sat up it would change.  I told the nurse, who put and IV in and O2 mask on my face, that I was sitting up.  Up I got, and the heartrate went right back up.  Of course, the nurse wouldn't remove the IV, nor take off the mask, nor take off the monitor.  I didn't fight much after that, I was really in hard labor with a baby who turned out to be "sunny side up" until the last moments.  I was not allowed out of bed or to go to the bathroom.  The nurse was absolutely horrible, having me push with 9cm dilation and she kept checking me every 10-20 minutes and left her hand inside me to "hold back the lip" from one contraction to another several times.  The OB even said I could get up, and could walk with the IV.  Nurse wouldn't have it, and wouldn't let me go to the bathroom.  Strangely, the OB said I couldn't possibly have to really pee, it was just pressure, but with every push I was urinating involuntarily (for an hour and 1/2...I have had now 6 births and only had to push 15 minutes with the first baby the rest were less than that).  Finally, the OB checked me after all that pushing and said, "she needs to get up and move around, squat or lean, or hands and knees.  The baby is OP."  After the OB left saying my baby was still high, I pushed with contractions while getting to move around.  With the urge to push, I pushed baby out while on my side completely in the bag of waters, the nurse had to pull the bag over my baby's head.  The baby had come out further than the head with the bag, not sure how far.  Anyway, the baby had meconium (no wonder with all my stress and the pushing) and they took her to suction.  The OB came back in the room and actually pulled on my cord to get the placenta out, it scared me so bad that I pushed as he pulled hoping he wouldn't pull out my uterus!  He then said I had strong bleeding, but then he removed a blood clot.  The placenta had been anterior and a bit on my left side, and low but not over my cervix.  I'm sure that had something to do with the bleeding, or maybe all that pushing before I was ready was the cause.  Not sure.  I do know that every time the nurse pulled her hand out of me I was shocked at the amount of blood I was seeing on her gloves.  With the bag intact, I wonder where all the blood (and it looked like clots) was coming from?  Anyway, I ended up with a healthy baby, and with a case of the blues for weeks.  I still don't like to look at labor room photos after the birth.  It causes anxiety as the nurse did so many things to counter me and what was best for my baby.  I just complied even though I didn't want to, and I'm a strong willed woman.  I knew it was wrong to push flat on my back, and argued but the nurse said, "it's better cause baby needs to come down over your tail bone and cannot if you're not flat on your back."  Did she really believe this or was it just a lie to get me to comply?  I'm not sure, but I do know she said several things like that during my labor, and it makes me wonder where she got her education!

    Henci Goer

    I am glad your daughter turned out to be healthy, but I am sorry that the birth turned out to be so unlike what you hoped it would be. It is not surprising that you were unable to assert yourself in the middle of active labor and pushing and while you were frightened about your safety because of the bleeding and your baby's safety because of the drop in heart rate.

    It is not uncommon with a birth such as yours to experience symptoms of post traumatic distress. Your saying that you feel anxious when you look at photos of the labor suggests this might be the case for you. Other symptoms include intrusive memories (flashbacks, nightmares, unable to stop thinking about the event), hypervigilance (feeling edgy, always on high alert), unusual anxiety about yourself or the baby, and avoidance of things that remind you of the experience. Sadly, for some women, that includes the baby. According to my dear friend, a marriage and family counselor who specializes in perinatal mood disorders, this is a functional response to trauma. Like the soldier who automatically ducks when he hears a car backfire, it is intended to help us protect ourselves from danger. Unfortunately, it can cause problems. Even more unfortunately, posttraumatic distress symptoms are often mistreated as depression when they are treated at all. If your feelings of anxiety and what you called "the blues" do not fade on their own, get back to me. There is effective treatment. I will consult with my friend and see what she recommends.

    Important to note: my friend also emphasizes that the experience of trauma is entirely subjective. It has solely to do with a person's internal reality and not any objective measure of what happened. It is, however, most likely to occur in situations in which an individual feels helpless and fears for his or her life and wellbeing or the life and wellbeing of a loved one. 

    -- Henci

    Archived User
    Congratulations on your baby girl!

    Wow, I am so glad you did not terminate your pregnancy after you received the results of the screening. I find this truly an amazing turn of events.

    I am so very sorry you had the birth experience you had. I find thees things just plain abusive and I would encourage you to put in a complaint if you have not already done so. We need to bring these issues out in the open.

    May you find healing and peace!



    Archived User

    Henci,

    Thank you.  I do think I had post traumatic stress disorder or something like it.  I just expected my birth to be different as I had better births at this hospital in the past.  Differences this time included OB on the floor, I went in with 5 hours to play around instead of with only 2 hours before the birth, it was during the day, the nurse was young and so I think probably new (my hep lock insertion involved a large pool of blood that ran down my fingers and onto a chux pad she had placed under my hand), and everyone was worried I'd deliver in the bathroom (what's so wrong with that?).  Baby was turned OP and so when I was near complete dilation, I quit dilating for a bit.  I pushed for over an hour and 1/2.  All previous births added together were less time than that and I've had five babies previously, the longest was 15 minutes and the last several were just two pushes.  So, I ended up with many things happening I didn't have happen before.  The coldness of the room when my baby was born, that no one spoke to me when I was asking what the sex of my baby was or if she was okay while they sucked meconium out of her...everyone just went about doing tasks as if I wasn't there...that added to my reaction.  What would it have taken for someone to come up to me and speak to me?  I was a plastic patient model in the bed and everyone was going through their drills.  That's what it felt like until the nurse came to push on my uterus (that hurt more than birthing).  Everything was just so cold and I was propped up on the bed nursing my baby while sitting on plastic and in my birth fluids for a long time before anyone did anything.  It was just uncomfortable and I felt so disappointed and angry.  Violated and in shock, that's what I felt.  Now, looking back, I realize it was not me who did anything wrong, it was the nurse.  Because of the running everyone had to do and the time of birth, shift change, I think everyone was just plain cold.  They were uncomfortable with me because I had argued with my nurse and they knew it.  So, there was silence when someone should have spoken.  With the possibility of Trisomy 18, I felt I had to birth in the hospital, and felt I had to comply with the monitors.  That was not wrong as a mom, it was however wrong of the nurse not to be more flexible.  I was a good mom, a good patient, and I did my best.  I even was right, I should have been allowed to move, allowed to go to the bathroom, and should have been allowed to shower as a comfort measure.  I should have not been encouraged to push until I felt the urge, and I should have not pushed flat on my back (baby was born as I pushed on my side...isn't this normal for an OP baby?). 

    I feel better now knowing that I did nothing to deserve the bullying, and that I was conflicted between being a good mom and a good patient, and also knowing what I know about birth...trying to do what I felt was safest and most effective for birth.  Considering it all, I was strong when I did fight.  I was normal when I didn't (labor makes me loose my pluck).  In the end, I probably was responsible for my baby being born healthy...without a c-section.  The OB knew I wanted to go as natural as possible and so he kept the waters intact, and when he finally saw my distress combined with the fact that the baby was OP, he told the nurse to get me moving (and I said, "I can move?' in a pathetic voice).  I bet he actually got onto that nurse later.  My own OB told me she was going to have a talk with the nurse too.  Knowing this helps me a lot as it might change the nurse and help her treat other mothers who aren't medicated with more charity.

    Henci Goer

    I think you have achieved a clear-eyed understanding of what happened to you and are on the money that it should not have happened that way and that you are in no way at fault. I think this can take you a long way toward healing from the experience. If you want to take it further, you may wish to write a complaint letter to the hospital's administration or others. You can find suggestions on how to do this at Unhappy With Your Maternity Care? File a Complaint! on the Citizens for Midwifery website.

    -- Henci


    All Times America/New_York

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