i choose hope

our little butterbean at 13.5 weeks ~ click to enlarge

when i first discovered i was pregnant my doctor immediately started to throw big words at me like amniocentesis and nuchal transparency since i am over the glorious age of thirty-five.

at the time i told him because of my history with pregnancy, i really needed to just get through the first trimester before i could even think about what happens in the second trimester. luckily he understood and told me i didn't need to make any decisions just yet.

as the weeks went by he gave me a couple options and during my 13th week i chose to have the first trimester screening done. this is a non-invasive test where they put together basically a mathematical formula to determine the risk factor of down syndrome in the fetus along with other chromosomal issues* based on age, ultrasound and a blood test.

these tests are not diagnostic but i felt it was important to screen now for anything that would be devastating to the baby's development. as much as i want a baby, jimmy and i don't wish to bring a child into the world who might have a severely compromised quality of life. this is only my opinion and it would need to be something pretty severe for me to make that decision. and let me just state for the record that i do not consider down syndrome as severe as some other chromosomal abnormalities.

before the test, jimmy and i met with a genetic counselor who went over everything they screen for. she asks questions about our backgrounds, ruling out some possibilities based on heritage and recommending certain tests based on other factors, drawing diagrams the entire time. for my age (thirty-fine) it was determined that my risk for having a baby with down's was 1 in 102. since a negative result would show up as 1/300 i was already seen as a positive before any tests were even performed.

this was disturbing to me because there is such a huge assumption made based on age before there are even any tests administered.

sure enough my test for down's came back positive but i was told that i tested as a 36-year-old woman and not a 39-year-old woman, whatever the hell that means, and my risk, although still elevated, was now 1/242. not the magic number of 300, but closer. because my test was positive, amnio was recommended at this point for a clear diagnosis.

my risk was lowered, i am guessing, because there is also a test performed using ultrasound called a nuchal fold or nuchal transparency test where they measure the fluid that accumulates on the back of the developing baby's neck. they also look for a nose bridge and some other things that  can give the doctors some information on the possibility of down syndrome.

the doctor who performed our ultrasound made us a nine-minute movie to take home of our baby who performed for us by dancing about, waving, turning and being generally active. the doctor pointed out his/her very strong nose bridge and told us the measurement on the back of the neck measured well within the normal range they look for.

so is all this hoopla really just because of my age?

my anxiety about amnio is the miscarriage factor involved. as someone who has suffered previous miscarriages, i am having a hard time putting myself in the situation where that might be an option. our genetic counselor told us the risk of miscarriage due to amnio is less than half a percent. she then added that the risk of our baby having down's is also less than a half percent. i am more scared of the amnio.

i had a sweet bean reach out to me a couple weeks back who has traveled my same journey and is currently pregnant. she told me that my mantra of,  in this moment i am pregnant, really resonated with her because she understood it and she shared with me that when all the crazy fears (false evidence appearing real) set in her mantra is:  i choose hope.

in this situation, i choose hope, not amnio. as i look at our growing baby above she/he is perfect to me. i saw this baby dance around during our last ultrasound and i had this overwhelming feeling that everything is fine and all will be okay. i can't imagine not having him/her at this point, i am already so in love.

my question to you is this: those of you who are pregnant, or had children over age 35, did you choose to have amnio? did you have a positive result on a first trimester screening and if so what was the outcome?

please share your stories, i would love to hear them. if you don't feel comfortable commenting with your name, please do so anonymously or email me directly. thank you.

* all my other tests came back negative. yay!

Comments

[Sheila]

::gentle hugs::
I think that they forget how many women are now having babies in their thirties. But on another note, my daughter has had 5 babies, all of which they did these tests and had she listened to them she may not have any as something was wrong with them all right up until they were born healthy, go figure that one.
God has given you a wonder*filled gift, now it is up to you to trust the Universe and love your baby unconditionaly and be ever so happy.

Much love lite to you and many prayers,
Sheila

[cayden]

First, tears welled up seeing your sweet little butter bean! I remember feeling so scared and unsure when I was told if my baby tested positive for Down Syndrome then we could take the next step of the amnio. To me personally I was more scared of the miscarriage factor, although very small, and not so concerned with the possibility of having a child with Down Syndrome. While i understand often doctors want to prepare us for this I wonder what for? (I do realize there are many factors medically and personally for knowing before birth) But to me it is my baby and a beautiful soul either way. love to you ~ so sweet. p.s. can't wait to see some of your creations you spoke of in previous post.

[Kristen]

I'lll put my answer out here only because I choose not to be scared of being judged for my decisions.

I was pregnant with my girl when I was 36 so it was encouraged that I have an amnio. We chose to have an amnio because we didn't want any surprises and if there were problems, we needed to know. I was desperate to find out the sex of our baby so I thought of the amnio as a bonus.

In hindsight and with all that I see in my own acupuncture practice, I might not be so quick to that decision now, especially with the way technology has advanced (even in just 7 years).

I think you and Jimmy have to go with your gut. There are soo many false positives that it's hard to make a compelling case for the invasive amnio. xo

[Sarah]

Hello there,
The picture is beautiful - thank you so much for sharing. Unfortunately I cannot offer any knowledgable advice, but I'd have to agree with the other comments - go with your gut. As I have also dealt with prior miscarriages, I think I'd be inclined to skip the ammnio for fear of that even tiny miniscule chance that it could lead to problems in and of itself.

Many calm thoughts & prayers...

-Sarah

[Kirsten Michelle]

hello sweetie,

i'm so happy that the majority of the tests came back looking great!!!
i'm sure this last one is a difficult choice, but i know with all my heart that you and jimmy will make the one that's right for your little butterbean. i believe that your heart already knows the answer ;-)
with both my son and my daughter, i approached all testing the same way. for every test, i needed to decide whether the information...the "knowing" it provided would help me as i progessed through the pregnancy.
i choose hope is a truly blessed mantra...
and from where i'm sitting he/she looks pretty perfect too ;-)

love to you all,
kirsten
xo

[PixieDust]

Baby Schmoopy is so beautiful... tears at such a true blessing in your life...

I am sorry for the difficult decisions before you, but all three of you are in my prayers, and before you know it this journey will have past the most difficult bumps in the road.

:-)

[d]

First I have to say that I cannot wait for the day that your butterbean meets our peanut!!

Secondly, I had the amnio because it was necessary for my personal experience as you and I discussed...but I do agree that it is a VERY personal decision and that you have to do what you feel is right for you and your baby.

As you know, I am tingling with happiness over your pregnancy and this very happy news. My thoughts and prayers are with you, the baby and Jimmy always.

Much love to you all 3 of you.

[Athena714]

That is a beautiful sight :)

Go with your heart, love. It will tell you the answer.

[mccabe]

i choose hope for you, too.

that picture is magical. :) thank you for sharing, sharing all of it. i see such great things for you, dear soul.

cheering for you and baby schmoopy every step of the way...

love
mcmermie x

[windylindy]

I kiss this face every single day.

You have the greatest insincts,, next to me.

[ceanandjen]

Oh thank you so very much for sharing this beautiful baby photo with us. Isn't watching them them the most amazing thing?

I can not offer much relevent advise either, except to say that the amino was discussed with us not due to my age, but due to the fact that I was considered moderately risky due to my lupus. We chose not to do it because...well because of a whole lot of reasons. The two main ones were that it scared me,and I, like you had this "feeling" that all was going to be just fine with our baby. It was an instinct, to be sure, but it was very real to me.

No one can advice you on what is best for you, but the best thing that I can tell you is to continue doing what feels right. Because I believe that is what is and will be right.

Thank you for sharing your journey with us...my heart leaps for the three of you.

Love you.xoxoxo

[reddawn]

Wow, sister, I am sorry you and j are having to make this difficult decision... I don't know what any of it means since I've never been pregnant, but I will say this: You'll know what to do, and whatever you decide will be the perfect choice.

Sending you loving energy!

[Christine]

Where to start? I used to almost be a midwife (I did three of four years in a university program in Ontario) and during that time I did a big(gish) research paper on prenatal screening, so I feel like I have a lot of information to share. But I also don’t want to bombard you with it because I don’t think that makes decisions any easier.

I think the most important thing to keep in mind is, as you say, the fact that the “risk” of having a baby with Down’s is about the same as the risk of miscarriage associated with having amniocentesis. So what it would come down to for me is, is the information you gain by doing the amnio worth that risk? Although the amnio will give a definite genetic diagnosis it cannot tell you anything about the way that genetic information will affect your baby. Meaning, people with Down’s have an enormous range of “affectedness” (related health problems, mental/physical (dis)ability, general quality of life stuff) and the information in an amnio isn’t that subtle, it is really just a “yes the genetic abnormality is present” or “no it isn’t”. And whether or not having that limited (but still maybe very important) information is worth the risk is a completely personal and for a lot of people, really tough call. And yes, if I understand the screening process correctly, you have tested “positive” so far simply because of your age, not because of any other markers (from what you posted about the ultrasound etc).

I always found this issue to be such a difficult one. I find it incredibly complex and emotional and yet this kind of screening is foisted on women/families as though it is totally routine and not a big deal at all!

Anyway, like I said I have loads of information and I would be more than happy to share, just let me know and we could email. I would also recommend websites for Down’s associations as helpful with some realistic information and just as a different take on the medical profession’s approach.

Christine
ps I am an often-reader-but-not-so-often-commenter so hello by the way, and also congrats! : )

[Tina]

I am glad you are going with hope. Go with your feelings, they are powerful.

I am so glad and happy for you that things are going well!!

[kb]

I choose hope with you.

xo kb.

[Kevin]

OK, so I'm a single guy, I can't offer any pregnancy advice. But I can tell you that whatever you and j! decide to do, I support you 100%. I love you guys and little butter bean!
xo

[sueberry]

While you know I am way over 35 & never been pregnant, I know many women in your shoes that had to make this same decision...I don't want to scare you, but the amnio scares me to death! I have known a few women who did in fact miscarry after the procedure. That half-percent thing sounds far low to me when I think of the few women I know how suffered tragic results afterwards. That "sack of fluid" holding the fetus is it's world right now & to me, it seems wrong to poke a hole into that world to drain some fluid & run the tests. Perhaps there are improvements in the procedure that I am unaware of, but I think you have every right to be scared or apprehensive to go that route. If it were me in your shoes, I am not sure I would have the amnio, but then again, it's easy for me to say that when I am NOT in your shoes. I like to have hope that if you are basically a healthy person with healthy habits & things thus far are going OK, that baby "D" will be just fine, too (without having to undergo the amnio). Age is just a number & I would not allow that alone to scare you into doing something you don't feel comfy doing.

Obviously, I wish you & baby "D" the best, whatever you decide. I wish I could advise you better, but not having walked in your shows, I cannot. Whatever you do, I have faith it will all work out & be just fine. You have my support no matter which path you choose.....but I like that for now, you are choosing HOPE. :) XOXO

[lizabean]

Oh, adorable little butterbean! Is it me or does that baby scream girl to you?

Regarding the amnio, I don't have much advice. I can tell you that what you wrote and the conclusions you came to about it sound like what I would probably do as well.

And I'm so touched by your little shout out. I have so much hope for that strong, whee butterbean of yours!!

[Andrea D]

What a beautiful schmoo-baby! I have to say that I am absolutely addicted to your blog, which I found through Andrea Scher, Denise & McCabe's. You remind my so much of one of my aunts. With regards to your situation... I know my stepmother had Amnio with my Little Sister (who is now 17!) and was fine. She was about your age when she had her. I think going with your gut is the right choice. I'm so happy for you! Cheers to you love,
Andrea from Toronto

[michele]

i had my first baby 3/30/2004 and i turned 40 3 months later; i had my second son when i was 42!
i had an amnio with both babies and i would do it again. obviously it is a personal choice and i have known many of woman who opt out, but i was SO glad i did. it gave me peace of mind.

it's almost painless...
the results are miraculous and make your heart and head feel light!

my first baby was born in france and he was great, he told me after to just "stay quiet"!
so stay quiet, read, watch tv, eat!

i bet if you ran a mile afterward you would be fine...this person is your to keep!

i am sooooo excited for you.
babies are so yummy, full of love and they smell like sugar....and then they talk!:)

congrats, peace love & light!

[Jennie]

I think you've made your decision by choosing hope over amnio (which is a great decision, by the way). But I'll throw in my 2 cents just because you asked (I found your blog tonight for the first time by searching based on Down syndrome).

I'm 39, and I'm currently 23 weeks pregnant with my second pregnancy that has made it this far (I have a 2-year old son). Both with our son and with this pregnancy, we declined the screenings because that's all they are: screenings. There's nothing diagnostic about them. We asked ourselves what would we do with information and we decided not to screen because we didn't want to do an amnio if we "screened positive." But then we had some ultrasounds that showed "markers" for Down syndrome. We still put off the amnio because markers can go away.

But one marker didn't go away. Our little guy has duodenal atresia, which is a strong marker for Down syndrome. After discussions with our perinatologist (who was very supportive of our previous decisions to not have an amnio), we thought it best to know so we did the amnio at the 21 week appt. The duodenal atresia requires us to deliver by Children's Hospital so that he can have surgery 24 hours after he's born. That's enough of a stress of unknowns for me. I didn't feel I could handle the surprise of Down syndrome while dealing with a baby in the NICU.

We received the results five days ago that our baby does have Down syndrome. It's devastating news that I don't wish on anyone. One of these days I hope to be able to say, "My son has Down syndrome" without crying, but I'm not there yet.

Anyway, back to your situation. You should get a level II ultrasound between 18-20 weeks and they will be able to look for "markers" at that point. Yes, there are babies born with Down syndrome who present no markers on ultrasound, but that's rare. If you see markers, you can change your mind about an amnio if you feel you need the information. By the way, you're right about the other trisomies having a much worse prognosis than Down syndrome. And those would have an even higher likelihood of showing up on ultrasound. For what it's worth, in my mind, you screened negative because your risk is lower than average for your age.

So enjoy your pregnancy!

[Maire]

My son is 6 months old. I am 36. I ws informed that due to my age when I was pregnant (35) that "it would be wise for me to have an amnio". I did do it and the results came back negative. Our son is the most adorable baby boy and I am incredibly lucky to have him. My husband and I made the joint decision to have the amnio based on what our Doctor had told us (simialr figures to what you heard from your doctor). While it was a scary time both having the procedure done, even though it took less than 10 minutes, and worrying about miscarriage and danger to the baby, for us, everything worked out fine.

Positive thought process helped a lot!

When it comes down to it, you should do what feels right for the the three of you.

[Kathryn]

I had two miscarriages at the age of 42. I just gave birth to my beautiful daughter in September at the age of 44. She is perfectly healthy.

I chose to have an amnio because of my age. The odds were dire, and we needed to know. I felt the chorionic villus test which can be done sooner than 16 weeks was too invasive and had a higher risk of miscarriage. I didn't bother with the non-invasive test you describe because we intended to have an amnio regardless. A test giving us the odds wasn't worth doing when we planned to find out the actual score. My husband made sure I did NOTHING for 72 hours after the amnio and waited on me hand and foot.

I did find it stressful to get the amnio, in that by that time I was far enough along to be so invested emotionally that I felt I might not be able to handle news if it was bad. But I focused on staying only in the present moment. The actual procedure was fine. They did a thorough ultrasound first, and we got to see that things looked good. The test didn't hurt and was over quickly. The two week wait for results was taxing, but I had loving friends who helped.

Whatever you decide, I send thoughts of blessing.

[Brianna]

Prayers going out for the remainder of your pregnancy and beyond.

[Megan]

Oh!! Crying here! That was the best picture I've seen in a long time. I can't imagine the joy that brings!

I LOVE the schmoo-baby comment above! That's a perfect name.

Love to you, and I'm so grateful to have found you. I know that the decisions you are making are not easy, but I think we all know they are made with the purest of hearts.

[pink sky]

congratulations on your beautiful and exciting news - yay!!! (just catching up) and i am right there with ya sista...choose hope. i'd say not to the amnio too, being a 35+ woman thinking about jumping back into the genepool. medicine can be way too scary sometimes. and testing in so many cases is such a money/insurance driven thing, sad to say. i love your mantra. it's perfect.

[la vie en rose]

what a wonderful mantra...one we can all use..."i choose hope"...YES!!!

your baby is absolutely gorgeous!

[AMANDA]

what a delight to come back to the bloggie world and see your sweet baby!

i am sending you, baby, and jimmy loving thoughts and prayers. i know you will go with your heart and your gut and it will be the right choice for you.

love you.
a

[Lana]

I am only 8 weeks pregnant, and am 37, and have decided to have an amnio. With my now 4 year old son, I had the NT ultrasound, and they came back saying our numbers were slightly elevated, and they then recomended an amnio. It was sucha worrisome time, hearing 'some' information that was concerning, and then having to wait etc. Anyway, I had the amnio and everything was fine. So, with this pregnancy, I have decided to skip over the worry inducing NT ultrasound and go straight to the amnio. It is a choice we made considering all the risks, and knwo that the definitive answer we will receive about our baby's health is worth it for us. That being said, I by no means suggest anyone should have an amnio if they don't want/need one. Best of luck!

[bee]

i'm 29 and have never had a baby, so i can't tell you any stories of amnio, but i just wanted to say how my throat choked up when i saw the pics of your wee babe. so. happy. for. you. and. jimmy.

[Celine]

This is a great picture of your baby. Thank you for sharing it with all of us.
I was pregnant with Twins at 39... so Amnio was obvious for us. It was our decision.It was necessary because I was pregnant with Twins and because my husband has an Uncle with Down's so this is in our family's genes. But it was also a very, very hard decision because miscariages can happen after this procedure. The doctor who did the procedure was wondeful, kind and warm. And it went very well. Few days (very long days!!!) later my OBGYN was calling me with great news. Everything was fine, babies were perfect and on the top I was having a Boy and a Girl!

[patricia]

my friend had a positive for down's amnio and i've known many parents of and had clients with downs -- i'm so glad you're choosing hope...incidently my friend who had the positive for downs amnio in her late 30's? both boys are a pain in the arse (lovable of course), not to mention very healthy, robust hockey players, and no, they don't have downs...but either way your babe is already looking perfect to me...

[Paulette]

I found your blog through a search on Down Syndrome. I like your mantra of choosing hope, that's always a good idea. I was pregnant at 42, an ultrasound showed excess fluid, also a marker for DS. I put off the amnio until 24 weeks when there is less risk to the baby, the midwife needed to know whether the baby could be delivered at the birthing center. I knew I would have the baby regardless. The amnio did show a little girl with Down Syndrome.The first year was hard, but the next nine have been filled with hope and laughter.There is very little gloom and doom for a child with Down Syndrome.
Keep choosing hope.

[rubyslippers]

i trust you, girly. i trust your mother's intuition. I just want to encourage you to go with your heart. You are a mama bear and you'll know when it's time to protect your cubs.

xoxo

[renee]

well, first, i have to state the obvious: whether or not to have an amnio is a very personal decision. unfortunately, many seem to forget this, or perhaps they do not believe it, as i heard many strong opinions about my amnio when we chose to have it.

i had known from the minute i was pregnant that i would have every test available to me -- and there were many, thanks to my age (36). i had the nuchal test done (genetic counselor and all that) and received very encouraging results. my number after that series was 1/3600 or something like that. still, i scheduled the amnio, as i worry obsessively by nature, and, for me, uncertainty is the worst condition of all. again, a very personal thing, that balance between knowledge and hope. due to a clerical error at my ob/gyn's office, i went to have the amnio a week too early. at that time, all 3 medical people in the room (radiologist, nurse, and ob) scoffed at my decision to have the amnio and tried to talk us out of it. we left disappointed and confused. i rescheduled the amnio for two weeks later, and at that appointment was told that some important "membranes hadn't detached yet" and as a result an amnio would be unsafe. again disappointed and tired of the emotional ups and downs associated with preparing for and then not having the test, we decided to forget it. no amnio. then, when i went in for my fetal scan -- the comprehensive ultraound, she (baby) had a calcium spot on her heart. this can be nothing OR it can be a marker for downs. it through me into a tailspin, disrupting the no-amnop peace i had achieved, so i changed my mind again and the amnop was performed then and there. it was clean, and ruby was born perfect in june.

the doctor who performed my amnio was so skillful and so confident that i never worried about a miscarriage. but then, i had never worried about a miscarriage before that, either. i had, however, worried about every single disorder under the sun, and some that i had made up, i think. my husbad made the very valid point that i may not have been able to healthily endure the pregnancy without the amnio. and he was right, i believe. so, for us, the miscarriage worry was never a palpable one, even if it should have been. and i trusted that, despite the two canceled amnios, which many people told me were "a sign" that i shouldn't have one. but i never felt they were signs; i felt they were incidental tests of my emotional fortitude at the time, but i still felt i wanted to know whatever i could. and i believe it was the right choice. FOR ME.

incidentally, the ob who attended my first canceled ultrasound had a nuchal test return of 1/150. her baby is perfect. yours already is. do what feels right for you -- to use a cliche sentence.

i think this is always a charged conversation because people infer that if you are having an amnio, you would abort a baby with an abmormality. why else have it, right? i know, and you know from the other posts, that this isn't the case. as for choosing hope, yes, start now...having a baby forces you to do so every day. it is such a huge and glorious leap of faith to create and nurture a human life. you sure sound ready. blessings all around.

[Jaclyn]

Beautiful babe :)

I choose hope, too.

Everyone is different and so everyone must follow their own path, though.

[colorsonmymind]

hmmmm lovie-I have been away from reading blogs for a bit and was so sad to see I missed being there and sending you love when you posted this.

I wouldn't choose amnio-because of all the miscarriages I couldn't bear to take the slight risk.

I am so thrilled that all the tests are pointing towards that stat being on your side.

What a gorgeous ultrasound image.
Love you honey
XOXOXO

[daisies]

we had this conversation and so you know that i chose not to and would likely choose not to again because of my history ~ am so very happy that your tests are pointing to the positive :) and um wheeeeeeeeeeeee and squeal ~ so so so so beautiful :) such beautiful baby life!! smooches!

[Tammy]

I'm a lurker at your blog! I don't have (and don't plan to have) children. But, hearing your story and about your journey just fascinates me. I love hearing how much you want this child. It gives me hope for the world!

My mother was 40 when I was born. She had the amnio and I turned out fine! And that was 33 years ago! :) I know you will do what is right for you. Thanks for sharing your journey! I'm wishing you peace and lovely times as you go through this amazing pregnancy!

[maddie]

Your beautiful baby looks so radiant to me
in the photo:)

warmest hugs sweetheart:)

[Katrin]

I did not do the tests. I already was in love with my baby and I so wanted to have her or him (it is a perfectly healty 9month old he now). Only the needle-thing is a 100% and I did not want to risk that (a friend of mine had some complication after it) and I know some Down-kids who are really cute. I think - but thats just me - that you never know what a child is going to be like, it is always a risk. I am sure you are going to have a wonderful child, and a really really loved one... All the best and a wonderful preagnancy with not to much fear. Greetings from Europe. Katrin

[boho girl]

mmmm...look at your beautiful, perfect babe.

so, so glad all is well honey.
"in this moment" is a wonderful mantra.
i might borrow it for fertility. ; )

love you.

[Wilma]

I was 42 when I gave birth to my now 2 year old girl. I did the nuchal translucency and the screening. Obviously due to my age it came back with high risk, but it did improve a bit compared to it just being based on age. I wouldn't have terminated for T21 and decided against the amnio. I waited 14 years to get pregnant, and wasn't going to add ANY additional risk, however small by having an amnio.

If the odds would have worsened I'd have had an amnio, to make sure and to figure out exactly what the issues would be. Babies with Down Syndrome often have heart problems, and I wouldn't want to risk a difficult labor with a child like that.

My little girl has no issues whatsoever. She's perfectly healthy, wonderful and deliciously average in all her milestones.

Being her mother is amazing.

[ncp]

i had the screening too
and though the results were pleasing to the doctors
so that they did not push the amnio
because of the nature of these tests
and their inherent weakness
based on *risk*
it was of no assurance to me

i
choose
h o p e . . .

[Chelsea Leis]

Your positive outlook is inspiring. The simple act of choosing hope is, in itself, a clear indication of a person who will not give up on something just because everybody else had done so. You remind me so much of a good friend who always sees the good side in everything.