I'm not even really sure where to begin. First, my worry about my sudden lack of symptoms was for naught (if I only knew what I should really be worrying about). Last week's ultrasound was highly reassuring as we saw both beans jumping about at 10w2d. I hit a wall soon after when I came down with a horrible head cold just before I was to jump on a plane to Aus.tin to visit with wonderful college girlfriends. Aside from killer ear pain on the plane, an asthma attack caused by dear friend's cat for which I could take no medicine and resulted in me staying in a hotel, the weekend was great. I had a bit of brown spotting/discharge on Saturday which scared me a bit but quickly went away.
The story changes a bit as I decided to go into doctor "just in case" after said spotting turned up again yesterday morning. Ultrasound again yielded jumping beans looking great and measuring right on target. I was psyched that the tech was indulging me a bit more by spending some time checking out each one closely. Until I noticed she was measured the nuchal fold of Baby B. I was supposed to have the first trimester screening on Friday so I began to get a bit nervous when she lingered there, sizing it up. It became obvious even to my untrained eye that something was wrong, that the space was much larger that than of Baby A. I kept it together until she had the doc overseeing ultrasounds that day come in and confirm that Baby B does have a NT measurement of 3.5mm, falling definitely above the normal cut-off of 3mm. I immediately lost it and barely composed myself enough to meet with my doctor who suggested aCVS even without the bloods. She arranged for me to meet the genetic counselor that afternoon which Mr. P. and I nervously did. She basically said this baby's chance of having a chromosomal problem (like Downs, or Trisomy 13 or 18) is is as high as 20% with another 10% chance of other defects or genetic problems. While she kept reminding us that that's still 70% chance of a healthy baby I am not reassured. 1:5 are not good odds. I am devastated. I am scheduled to have a CVS (chorionic villus sampling) tomorrow. We decided that even though we probably wouldn't choose to end the pregnancy we just couldn't wait not knowing anything. I am choosing to put the small risk associated with the procedure out of my mind at this point. I can't deal with additional worrying. My face is swollen from crying. I'm exhausted and can't concentrate on anything. I don't know how I will function at all if the results come back positive. I am at work but only to keep myself out of the house. I really haven't been able to accomplish anything.
I have worried about a lot since the beginning of the process, most of which I considered to be legitimate, reasonable concerns. This didn't even register on my radar. The chances were so small, so remote. I feel blindsided. And alone. And confused. In just a matter of minutes I went from total joy to complete despair and disinterest in my small but growing belly. I don't want to look at maternity clothes or buy books or even eat, though I am making myself do the latter. If anyone has had an experience like this or knows anyone who has and has any info or advice to share it would be much appreciated. I'll be honest, I'm really looking for those "happy ending" stories though I know I also need to prepare myself for other possibilities so I guess I should be open to those too.
16 comments:
Im so sorry to read this: the fear that is lodged in your mind right now. I am keeping you and the little jumping beans in my prayers.
You will be in our prayers... Hoping all will be fine.
Sometimes those early markers and test are not always accurate... don't loose hope yet...
But if you get any negative news.. I'm available for support and so are many families who know this t13 journey.
I am mom to a delightful trisomy 13 child...who is now 7yrs old... Gosh, I can't say enough wonderful things about this perfect soul... I was in shock too... but know, whatever the outcome... You have a beautiful child, within you, loving you and a child you already love.
There is a wonderful support site for families. If the tests do come back positive... please know you are not alone... and that there is awesome support via the internet and possibly locally. Of course many professionals will tell you these kids don't survive...but thats not always the case... its just what the outdated books say and what they've been taught-- In most cases many of these trisomy 13 can be brought to term and held in their parents arms... for hours, or days... and depending on what you choose - comfort care, palliative care or added medical intervention, you may just have many days.....visit this site full of inspirational stories.
http://www.livingwithtrisomy13.org
Blessings,
ThereseAnn mom to Natalia
I am so sorry for this terrible worry you are having to go through. I will keep you in my thoughts.
I am sorry to hear this kind of news. I will pray for you.
We had an increased nuchal fold on my 2nd daughter. I ended up at the periantologist 9 days later where the baby did not test for the other soft markers. The baby was born without any disorder.
I can tell you this though. In the 9 days of not knowing, my crying turned into acceptance of my daughter. No matter what, she was still mine. My child. I would hope she didn't have a disorder that would restrict her life in some way, but if she did, it wasn't something we could change, only accept.
I have a new found knowledge in regards to genetic disorders now and they just aren't as scary as they once were to me. I did think it was the end of my world for a day or so, but it only took a short time to realize it was just a new turn in my daughter's new life.
Good luck with finding your peace. ~hugs~
Wishing you the very best for the CVS today, I hope it all comes back perfectly for you.
I'll be thinking good thoughts for you and the beans!!
Two people who recently had a high NT measurement are Helen (everyday stranger) and Marie-Baguette (max makes 3). you might want to drop one or both a line. The NT measurement is not definitive, it's just indicative.
Also, you know this is being measured super early? My understanding from the pioneer doc in the Uk who developed a lot of this testing is that it's really only accurate between 12 and 13 weeks. His clinic simply won't do the measurements outside this window.
Hang in there.
PS make sure the person who does your CVS is very experienced at CVS. It makes all the difference.
I hope your cvs procedure went well today. I've been googling about 3.5mm NT result the past 2 days because I am in the same situation and that's how I found your blog. I have my cvs procedure tomorrow. We just found out on Tues, 2/19. The past 2 days have happened so fast and I feel so sad and shocked. I was just looking forward to seeing our baby on the monitor and never expected this. I've been searching for positive stories on the web and here are some I found. I'll be praying for both of our families.
http://www.squidoo.com/nuchal
http://boards.babycenter.com/n/pfx/forum.aspx?nav=messages&msg=429.3&sr=y&webtag=bcus1311584
http://www.pregnancy-info.net/QA/answers-10wk_ultrasound_showed_fluid_around_neck_now_a_CVS_/
I posted my own question here, seeking positive stories:
http://www.pregnancy-info.net/QA/answers-nuchal_translucency_screening_test_result/
Hopefully, we will hear some. If you like to stay in touch, let me know and I'll post my email.
the baby center link didn't come out, trying again
http://boards.babycenter.com/n/
pfx/forum.aspx?nav=messages&msg=429.3
&sr=y&webtag=bcus1311584
I will be thinking of you. I can not even imagine the fear. I pray the CVS goes well and you get good results.
Thalia is right about the NT measurement and the timing. I've had a medical termination due to trisomy 18, and there is info on my blog about it, as well as info about prenatal tests and the relation to placental health. You could have a perfect baby, and a bad placenta, which is why those blood tests at 12 and 15 weeks are critical even if the chromosomes are okay.
Or a bad nuchal can show birth defects that are not chromosomal. Some are solvable, some are not. Lisa B at Making Other Plans had a baby with a 7 mm nuchal, and a perfect CVS, but her child was born with Sotos syndrome. She is coping well, but has free health care and other resources to draw on so it may be different.
Email me if you have any questions.
Regardless, don't assume that a good CVS is the end of it. You need to be closely monitored from here on in.
I have twins as well (IVF), and one of them fell into the "abnormal" NT category. We also decided to go ahead and have a CVS done, and found that the CVS was far, far less frightening than people had made it out to be. The worries of CVS are minimized based on the doctor - the more CVS the doctor has done, the better yoru chances that nothing bad will happen.
In the end, my CVS came back fine. I have two happy and healthy twins, even after the Great Big Scary CVS and the abnormal nuchal scan. Honestly, feel free to email me if you want, I am around. I blogged about the CVS under my other blog at http://twistedovaries.com.
I'm so sorry. I don't have any advice or experiences to share, so I'll share my wishes that you get reassuring news from the upcoming tests.
I missed this until today. I don't have any experience with this, but I will keep you in my thoughts and prayers.
I just discovered your blog and I feel like I wrote this same exact post. these first trimester screens are brutal! I am glad to hear that your cvs went well and you got some comforting results. I am now trying to sit tight and wait calmly (yeah, right) for my upcoming amnio and quad screen. no fun.
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