Hello everyone. Please forgive me for being a lurker for the past several weeks. I haven't wanted to jinx myself or this pregnancy (I've had two previous losses and am a FTM). Last week after waiting for 11 days to hear back, I received my panorama results. Unfortunately, my baby girl came back high risk for Turner Syndrome. Even scarier is that my doctor admitted to me that they haven't had any patients in the practice receive this result before and they weren't sure as to next steps. So I was left to my own devices for four days googling horror stories and positive stories but still not knowing what to do next.
Finally, I received a call from the Regional Perinatal Center that I was booked for three appointments on November 8. A level II sono (all others have looked perfectly normal)., followed by a meeting with a geneticist and they have scheduled me for an optional amniocentesis after that. At that point, I will be 16 weeks.
I have heard mixed stories on false positives for Turner Syndrome with panorama and my SO believes that the amnio could provide us with either a sense of relief or we can spend the next six months preparing for a very different life than we expected but we can research specialists and make arrangements to give that little girl the best possible life given the circumstances.
I am looking to hear from other women who have been here before and why you did or didn't choose to get the amnio. The doctor told me that the m/c rate from amnio is less than 1 in 500 which is less scary than I had previously heard, but still risky none the less. Any experience that is shared is GREATLY appreciated.
Re: Amniocentesis experiences?
The problem is each time I talk to tell they spew facts right off of panorama's website saying that there's XYZ% chance of a false positive and then in the same breath tell me that the lab told them it's a 50/50 chance. I have officially switched dr's with the referral to the Perinatal Center so I don't need to worry about working with a clueless practice. I gave them a big piece of my mind Monday morning when they still didn't have any answers for me and said it can take three additional days to secure an appointment. By far the worst week of my life so far. Fortunately, the PC is VERY responsive and got me in for all of the necessary appointments on the same day so I am grateful for only one anxious day rather than three separate ones.
Sorry you’re going through this. The only personal experience I can share is that my mom had an amnio when pregnant with me 30 years ago, and I’m obviously here and fine. I have to imagine doctors have gotten better at amnios since then. Sending good vibes your way!
I'm still scheduled for next Wednesday but on Halloween my OB had me come in for a suspected Kidney infection (still waiting to hear back) and she did my 16 week appointment then. It felt great to hear baby girl's heartbeat so loud and strong. She's still there and in the high 160s, so my optimism for what I'll find out next week is higher than ever and I'm not panicking every time I go to the bathroom that I'll see blood.
My anxiety has decreased significantly and I'm happy to say I've made it through some days without crying or having a panic attack. I'm sure it will kick into overdrive after the amnio while I was for results, but I'll take the good days when I get them!
I was way easier than I thought. DH was able to stay with me the whole time. I was 16 weeks during my amnio. It was not painful at all. I was told to stay off my feet and take it easy for 24 hours afterwards. I was lucky that everything came back normal. I was able to enjoy the rest of my pregnancy instead of worrying.
The "not knowing" part is the worst in my opinion. I would get the amnio if it were me, but only you can make the choice that works best for you.
Good luck.