| Author | |
Kathryn
Forum All-Star
Joined: April 24 2009
Location: N/A
Online Status: Offline
Posts: 1520
|
| Posted: March 31 2010 at 10:54am | IP Logged
|
 |
|
Since all the other posts are closed, I'm posting here for prayers AND advice.
I went for the 12 week ultrasound last week and according the dr., the "folds" and everything looked small and good so I just needed to do the bloodwork. He said based on my age alone (40), my odds for Downs etc. was 1/130 I think. Well, the nurse calls today and said based on my age, weight, ultrasound, my risk before bloodwork was 1/71 and now with bloodwork it's 1/65. ?!?!?!?! So, they're recommending amnio which I've never had done and I'm a basket case. What does this mean? I am soooo very scared, confused, upset, worried.... I don't know what to do.
Please prayers and advice.
4/1 Update: My husband and I met with our OB this morning and he didn't seem concerned about these numbers at all. He said that basically my risk didn't change before the screening but the results still put me in the "increased risk" range which is why he says initially to consider an amnio. It appears my hCG levels were elevated but that the NT scan actually reduced my risk since the fold was only 1.2 mm and the nasal bones were present. Also, the other blood level was normal and they based the risk on me being 41 since that's what I will be at birth.
So, he recommends that we do the Level II sono in a few weeks w/ a specialist and go from there. If we wanted to know definitively, an amnio is the only way to go but he didn't pressure at all and didn't even say that's what he would do. So, that's our plan for now.
Thanks for your prayers and advice.
Have a blessed week-end.
__________________
Kathryn in TX
(dd 16, ds 15, dd 8, dd 5)
|
| Back to Top |
|
| |
CrunchyMom
Forum Moderator
Joined: Sept 03 2007
Online Status: Offline
Posts: 6385
|
| Posted: March 31 2010 at 11:00am | IP Logged
|
|
|
Prayers, Kathryn!
My personal policy has been to avoid tests like amnio. They are not 100% accurate, pose a slight risk in themselves, and I'm not sure what it would accomplish. You would not do things differently if you did know. I'm so sorry your doctor and his staff have you worried about this already, but I personally have always hoped I would not know about a problem until I *had* to deal with it. Why spend your entire pregnancy worrying about something you can't change and may or may not be true?
__________________
Lindsay
Five Boys(6/04) (6/06) (9/08)(3/11),(7/13), and 1 girl (5/16)
My Symphony
[URL=http://mysymphonygarden.blogspot.com/]Lost in the Cosmos[/UR
|
| Back to Top |
|
| |
hylabrook1
Forum Moderator
Joined: July 09 2006
Online Status: Offline
Posts: 5980
|
| Posted: March 31 2010 at 11:06am | IP Logged
|
|
|
Praying, Kathryn.
Peace,
Nancy
|
| Back to Top |
|
| |
guitarnan
Forum Moderator
Joined: Feb 07 2005
Location: Maryland
Online Status: Offline
Posts: 10883
|
| Posted: March 31 2010 at 11:10am | IP Logged
|
|
|
I did an amnio with my dd and was reassured by the results, but that reassurance was entirely eclipsed by the horrible stress of undergoing the procedure. There was my precious baby on ultrasound (wiggling!) and the doctor really struggled to do the amnio...it was scary. I told myself I would never do that again (and I was only 35, so I thought I would have the chance to have more children for sure).
I think what helped me more during that stressful time was the positive comments I received from our pastor and from other church friends - turned out that our parish had a big Down Syndrome support group, etc. - and I knew that I would find help and advice if my child did indeed have this condition.
I know it is scary for you - oh, how I know! - and I am praying for you and baby.
__________________
Nancy in MD. Mom of ds (24) & dd (18); 31-year Navy wife, move coordinator and keeper of home fires. Writer and dance mom.
|
| Back to Top |
|
| |
JodieLyn
Forum Moderator
Joined: Sept 06 2006
Location: Oregon
Online Status: Offline
Posts: 12234
|
| Posted: March 31 2010 at 11:20am | IP Logged
|
|
|
The blood test? If it's the one I'm thinking of (and of course I can't remember the name).. the odds of it being wrong are pretty high. I've always refused it for that reason. With the risk of miscarriage with an amnio I wouldn't do it. And as others pointed out, it's not going to change the outcome.
Praying
__________________
Jodie, wife to Dave
G-18, B-17, G-15, G-14, B-13, B-11, G-9, B-7, B-5, B-4
All men who have turned out worth anything have had the chief hand in their own education.
-Sir Walter Scott
|
| Back to Top |
|
| |
stefoodie
Forum Moderator
Joined: Feb 17 2005
Location: Ohio
Online Status: Offline
Posts: 8457
|
| Posted: March 31 2010 at 11:26am | IP Logged
|
|
|
Praying, Kathryn.
I wouldn't do it either b/c of the miscarriage risk.
I know some people who would prefer to do the amnio not because they would terminate if it was positive but so they can prepare themselves mentally or emotionally... but I had my last baby at 41 and even though some doctors were concerned, dh and I decided to just trust that God will provide whatever we needed should we have had to deal with a baby who has Down S.
__________________
stef
mom to five
|
| Back to Top |
|
| |
SeaStar
Forum Moderator
Joined: Sept 16 2006
Online Status: Offline
Posts: 9068
|
| Posted: March 31 2010 at 11:47am | IP Logged
|
|
|
Kathryn-
Hugs and prayers for you... it is a shame that technology also brings so many worries, so many of which are unfounded in the long run. I would also pass on the amnio; there is a risk of miscarriage that is very real, though downplayed. Also, a friend of mine who is an OB nurse has told me that new equipment and testing has allowed the doctors to find all kinds of warning markers for DS that they never would have found even 20 years ago, yet the rate of DS births has not increased.
I will continue to pray that Our Lady will bring you a peace for Easter that will last right up until 10/10!
__________________
Melinda, mom to ds ('02) and dd ('04)
SQUILT Music Appreciation
|
| Back to Top |
|
| |
Mackfam
Board Moderator
Non Nobis
Joined: April 24 2006
Location: Alabama
Online Status: Offline
Posts: 14656
|
| Posted: March 31 2010 at 12:14pm | IP Logged
|
|
|
I've been where you are, Kathryn. Honestly, neuchal folds and bloodwork, while they are indicators for Downs, are not great indicators for risk, and Jodie's right, that blood test is known for being an inaccurate indicator.
Know that I'm holding you close in prayer. Remember that you can do all things through Christ. God WILL supply the grace you need for each and every moment of this pregnancy! Trust in HIM!!!
There are things to consider with the amnio. I have had one. It is frightening. There are risks for both you and the baby that may not be conveyed in a significant way by medical personnel unless you have a very good pro-life doctor, but I know you're aware of them so I won't rehash them. The risks are significant, so you are right to be very concerned about the decision and potential.
May I offer something for you to consider from my own experience with this? If I were ever in a position where an amnio was recommended with reason, I would insist that I be referred to a Maternal Fetal Specialist (preferably a pro-life one, but if not, just be prepared to stand your ground) and a high resolution ultrasound machine BEFORE agreeing to the amnio. A high res U/S will offer a Maternal Fetal Specialist more information...consider after your ultrasound consult: are there any physical/special issues we would know more about with an amnio? It's possible you could be more proactive with physical issues which can be diagnosed to some extent through an ultrasound. Does that make sense? For example, heart conditions are common in little ones with Downs. A heart condition is generally diagnosed with accuracy through an U/S. There are pediatric cardiologists for this and they are very good at diagnosing and coming up with plans while baby is in-utero. If everything seems ok physically, I would not consent to an amnio.
If the purpose is *just* to diagnose I would have a hard time accepting that this procedure does not offer more benefit than risk.
If you have a confirmed Down's diagnosis through an amnio there is a small possibility that this could help your baby. There were cases and studies that show that some early inventions can assist a Down's baby in development in-utero. It's been a few years since I looked into it, but it would be worthwhile for you to check into. At the time I looked into it, a pro-life group of OB's (I believe they operated out of UCLA) were doing some research with regard to certain supplements being introduced to the baby in-utero that were an aid to development for these precious babies. Another possibility is intra-uterine surgery for some sweet babies that gives them a better chance of survival. We consented to an amnio because it was necessary to pursue an intra-uterine surgery that might have been offered to help our son. Also, an early diagnosis can set in play a very pro-active delivery team that could help (though this could be in place with *only* ultrasound information as well). These are possible positives to consider for you, Kathryn. Some of my research is old, so PLEASE look into these carefully before you decide if they are significant reasons for your situation.
I looked into most of this to try to arm myself with information after my first amnio. Because we have had one precious child with Down's, we are in a very high risk bracket for conceiving others with Down's, and therefore there is pressure for us to have an amnio with every pregnancy. We have declined. I'm not sure I would go through it again, Kathryn, without significant and compelling reasons that the results from it confirming a diagnosis could positively impact my baby in some way. And I so far have not been convinced that this is the case.
I hope it was ok to share some of my own considerations with you, Kathryn. Please don't take my word for them. Share them with your husband and take some time to come up with a good plan that involves prayer before you consent to an amnio. I sought spiritual direction when I was going through everything with my the pregnancy related to the amnio and this was a huge help. This is not a life or death decision that must be made today. I am praying for you. Please feel free to PM me if you have any more questions and would like to ask them privately.
I promise you my prayers! I know how you're feeling after that phone call from the doctor. I wish I could pop over for tea and to sit with you until your husband gets home. Know that my thoughts and prayers are with you! 
__________________
Jen Mackintosh
Wife to Rob, mom to dd 19 , ds 16, ds 11, dd 8, and dd 3
Wildflowers and Marbles
|
| Back to Top |
|
| |
Christine
Forum All-Star
Joined: March 23 2006
Location: Washington
Online Status: Offline
Posts: 1151
|
| Posted: March 31 2010 at 12:32pm | IP Logged
|
|
|
Kathryn, I see that Jennifer recommended that you try to find a maternal fetal specialist. This website might list a pro-life maternal fetal specialist in your area. You and your little gift from God are in my prayers.
__________________
Christine
Mommy to 4 girls, 5 boys, & 2 in God's care
Memories of a Catholic Wife and Mother
Pretty Lilla Rose
|
| Back to Top |
|
| |
Kathryn
Forum All-Star
Joined: April 24 2009
Location: N/A
Online Status: Offline
Posts: 1520
|
| Posted: April 01 2010 at 1:32pm | IP Logged
|
|
|
Update in OP
__________________
Kathryn in TX
(dd 16, ds 15, dd 8, dd 5)
|
| Back to Top |
|
| |
Helen
Forum All-Star
Joined: Dec 03 2005
Online Status: Offline
Posts: 2826
|
| Posted: April 01 2010 at 4:14pm | IP Logged
|
|
|
Prayers continue for you Kathryn
__________________
Ave Maria!
Mom to 5 girls and 3 boys
Mary Vitamin & Castle of the Immaculate
|
| Back to Top |
|
| |
Angie Mc
Board Moderator
Joined: Jan 31 2005
Location: Arizona
Online Status: Offline
Posts: 11400
|
| Posted: April 01 2010 at 4:30pm | IP Logged
|
|
|
Kathryn wrote:
4/1 Update: My husband and I met with our OB this morning and he didn't seem concerned about these numbers at all. He said that basically my risk didn't change before the screening but the results still put me in the "increased risk" range which is why he says initially to consider an amnio. It appears my hCG levels were elevated but that the NT scan actually reduced my risk since the fold was only 1.2 mm and the nasal bones were present. Also, the other blood level was normal and they based the risk on me being 41 since that's what I will be at birth.
So, he recommends that we do the Level II sono in a few weeks w/ a specialist and go from there. If we wanted to know definitively, an amnio is the only way to go but he didn't pressure at all and didn't even say that's what he would do. So, that's our plan for now.
Thanks for your prayers and advice.
Have a blessed week-end. |
|
|
Praise God for this positive update . I've been praying.
I have been in a similar situation - 18 years ago. I still grimace (and honestly, get angry) when I think of the fear that struck my heart when talking with the care provider who jumped from my "numbers" to amnio...when in the end I learned that there were other safer and less invasive options in between - to include rejecting tests. I'm just so sorry for you and for all women and their families who continue to face these situations.
Praying for you and your sweet baby .
Love,
__________________
Angie Mc
Maimeo to Henry! Dave's wife, mom to Mrs. Devin+Michael Pope, Aiden 20,Ian 17,John Paul 11,Catherine (heaven 6/07)
About Me
|
| Back to Top |
|
| |
SeaStar
Forum Moderator
Joined: Sept 16 2006
Online Status: Offline
Posts: 9068
|
| Posted: April 01 2010 at 8:15pm | IP Logged
|
|
|
I am glad to see your update, Kathryn.... I'll be praying all the way to October!
__________________
Melinda, mom to ds ('02) and dd ('04)
SQUILT Music Appreciation
|
| Back to Top |
|
| |
Mackfam
Board Moderator
Non Nobis
Joined: April 24 2006
Location: Alabama
Online Status: Offline
Posts: 14656
|
| Posted: April 03 2010 at 9:21pm | IP Logged
|
|
|
Entrusting you and this little one to the Divine Mercy, Kathryn! Rest in His Peace!
__________________
Jen Mackintosh
Wife to Rob, mom to dd 19, ds 16, ds 11, dd 8, and dd 3
Wildflowers and Marbles
|
| Back to Top |
|
| |
aussieannie
Forum All-Star
Joined: May 21 2006
Location: Australia
Online Status: Offline
Posts: 7251
|
| Posted: April 04 2010 at 4:52pm | IP Logged
|
|
|
Praying for your little baby Kathryn and for your good health and peace of mind.
__________________
Under Her Starry Mantle
Spiritual Motherhood for Priests
Blessed with 3 boys & 3 girls!
|
| Back to Top |
|
| |
4Real Forums : We Pray to the Lord
Topic: Down Syndrome Screening
