1 in 5 chance of Down's, Edwards or Patau syndrome, feeling very scared!
GOhara · 05/03/2016 13:23
Hi I'm really hoping to hear other people's experiences of this.
I'm 12 weeks pregnant with my 3rd child, at our scan on Wednesday we were told the baby has a Nuchal fold of 5.9mm, a liquid filled structure in the brain and the 4th chamber of the heart could not be seen. Yesterday I received my blood test results back which have given a 1 in 5 change of Down's, Edwards or Patau syndrome. As you can imagine we are devastated, the specialist midwife has told me that our child is very likely to have Edwards or Patau syndrome and its almost definite I will have to end the pregnancy. I'm having to wait till Wednesday for a CVS which seems like forever away. I'm just wondering if anyone else had has a similar experience, I'm feeling very scared and the waiting is horrible.
fermerswife · 05/03/2016 16:36
I've no experience of your situation but just wanted to hold your hand waiting for Wednesday. im so sorry you're going through this. I'm sure some of the ladies who have experienced what you're going through will be along soon. Xx
GOhara · 05/03/2016 16:50
Thank you fermerswife, I really appreciate it. my husband is being really great but I do feel very alone xx
hopinghopefullyagain · 05/03/2016 16:56
I gave birth to our baby who had patau syndrome. Sadly she was stillborn but some babies survive for days, weeks and months. If the cvs confirms then you with have the option to end your pregnancy snd many choose that option because it is right for them. Many others choose to continue their pregnancy. You DO have a choice.
GOhara · 05/03/2016 17:09
Thank you hopinghopefullyagain for sharing your experience with me, I'm so sorry you lost your baby. I honestly don't know what to do with myself, the midwife reeled off all this horrible news ending the phone call with "your baby may have already made the decision for you and died by Wednesday" then left me to have a nice weekend... Really!! I feel like I have no choices. They have said its not my fault but I feel so guilty, I'm meant to be looking after this little baby and feel like I have failed.
KittyandTeal · 05/03/2016 17:18
I have experience of a later diagnosis of Edwards and a termination for medical reasons.
The first thing I will say is that you don't have to have a termination. I chose to for many reasons that I am happy to discuss in pm. However, it is possible for babies with t13 and t18 to be born alive and lives days or months. It really depends on the specific anomolies with each baby.
It is a horridly stressful and heartbreaking time. A high nt and fluid in the brain doesn't sound good. Also if you are high risk for t13 and t18 you are (weirdly) unlikely to be high risk for t21 based on blood work.
I know what the midwife said sounds very harsh, especially when you've just got this news, however, as awful as it sounds I hoped and prayed my dd2 had already died the day I went for my termination. I knew she hadn't as I could feel her moving.
Arc are a wonderful charity who can help advise and put you in touch with women who have been in your situation. I am also more than happy to answer any questions and talk either here or private messages.
💐 For you. It is the hardest time
KittyandTeal · 05/03/2016 17:21
And yes, I absolutely understand the guilt of supposed to be looking after and creating a perfect little baby. That guilt does go at some point, and acceptance that it is down to utter shitty chance does start.
For now, one hour at a time. Get to the cvs and try to look after yourself as much as possible x
Quoteunquote · 05/03/2016 17:27
I had a trisomy 13 (patau) baby, sorry this has happened to you, it's a very hard place to be in.
I did go on to have three non issue babies , all I can say is be very kind to yourself, and each other, and good luck.
mmmminx · 05/03/2016 17:34
Message withdrawn at poster's request.
millionsofpeaches · 05/03/2016 17:40
I am so sorry to read that you ate going through this. My baby was diagnosed 7 years ago, almost exactly, with t18. He had multiple issues and i felt the least worst option was a termination. I was lucky enough to be able to have a CVS the same day as the scan, but then had to wait over the weekend for the results. Then the termination the following week. 2 weeks from scan to no longer pregnant.
All I can say is that that decision was what my dh and I felt was right for us and our baby. It didn't make it easy. I eventually sought counselling which helped so much. If it does come to that for you, and I hope it doesn't, I would recommend getting someone to talk to. ARC antenatal results and choices were also great. The forum there was very helpful to me and helped me to realise I wasn't alone or a bad person for having made my decision. It also helped me that I was able to understand the biology behind it as I am a biology teacher, which meant I was able to sort of step back and be analytical about the situation, iyswim.
Once again I am so sorry you are going through this. If you have any questions ask here or pm. I am happy to help in any way I can.
GOhara · 05/03/2016 17:59
It feels so good to be talking to people who have had similar experiences instead of googling each of the conditions.
That's one thing I didn't understand they said I have a 1in5 chance of each of 3 which they had never seen before at that clinic... Scary!
I know in my heart that I couldn't continue knowing the baby has such awful brain and heart defects, I just imagine this tiny little baby in so much pain. I'm dreading that they find more abnormalities on Wednesday.
Wednesday just seems like forever away, then there will be the waiting for the results. I feel like I know inevitably what will have to happen and in a way want it to just be over..: I'm sorry if that sounds awful.
Thank you to you all for sharing your stories with me, so sad but you have given me much comfort in knowing that we are not alone. Xx
GOhara · 05/03/2016 18:04
It's also very positive to hear about no issue babies afterwards. I'm very lucky to already have 2 lovely daughters, who keep me very busy which helps at this time. X
millionsofpeaches · 05/03/2016 18:11
I can totally relate to just wanting it to be over, it doesn't sound awful at all. I knew in my heart that my baby had t18 (we were given a 1in9 of one of the trisomies I think, but I knew it was Edward's oddly) and all the waiting seemed pointless. I am ashamed to say I got quite drunk the night after the CVS as it seemed like my pregnancy had already ended (not proud ) I hope you and your dh/dp can support each other. Cry too, I found it helped, crying together, although might not be easy if you have older dcs to deal with. Hang in there. (((Hugs)))
millionsofpeaches · 05/03/2016 18:14
I have gone on to have my two dds who are fine and healthy (although why won't they sleep in their own beds?! ) We had the rigmarole of CVS etc with dd1, but I won't go into that now. More ((hugs))
amysmummy12345 · 05/03/2016 18:21
I had nc fold of 3.7mm coupled with bloods gave us 1:5 chance of downs/Edwards/pateau... CVS came back negative for all three, good luck op, thinking of you xxx
GOhara · 05/03/2016 18:22
Millionsofpeaches I feel the same way, our odds are so poor considering I'm 28, healthy, a non smoker with no family history of any condition, the midwife said it's practically definite. I feel like I've already lost the baby, to be honest from very early in I felt something was different this time. My husband is fantastic and very strong for me when I need him to be, I just want the waiting to be over xx
KittyandTeal · 05/03/2016 18:26
I was given a 1:43 chance of t13 or t18. From then I knew it was Edwards, I don't know why I just did. Numbers don't mean much when you're talking about your own baby though.
I am currently 14 weeks with an unaffected (by trisomies, and healthy so far) baby boy. However. That doesn't help how you're feeling atm I imagine.
I understand your feeling of dread but at least on weds you'll have a better idea of what kind of anomolies you are taking about. I found that I completely detached when going over dd2s issues, I looked at them in a totally medical and factual way and didn't put them together with the baby I was carrying. We made our decision in a very detached and somewhat cold way but it was definitely the right choice for us. With dd2s abnormalities she would have realistically not been born alive or would have struggled significantly.
reader77 · 05/03/2016 18:30
I had a Trisomy 18 and went on to have another healthy baby straight after.
Waiting is the worst..X
hopinghopefullyagain · 05/03/2016 19:14
I agree with the comments above - ARC can be really helpful and waiting is the worst. Our journey lasted several weeks from the day anomalies were first identified. We had some grim days in those weeks but, for us, nothing was as bad as that first day.
KittyandTeal · 05/03/2016 19:20
I agree with hopefully, that first day your world comes tumbling down.
I now see it as the first day of my new life (sounds very dramatic but that's how I feel. And strangely there's been positive parts too)
GOhara · 05/03/2016 19:21
It's lovely to hear about all the unaffected babies born since, congratulations KittyandTeal.
I just feel like I'm going to be stuck in this dark time forever, I'm having trouble seeing an end to it all. With every hour that passes I try to think that I'm a bit closer to being on the other side of this and my baby at peace xx
GOhara · 05/03/2016 19:27
Oh my world did come crumbling down on that first day, they took us to a little room to wait while our paperwork was done, I went crazy in the I didn't know what to do with myself... Very unlike me!! That night I cried the whole night, it was very very painful. Now I feel much calmer and am focusing on doing what is best and fair for my family including the baby. I hope that the first day is the worst, I really really do xx
KittyandTeal · 05/03/2016 19:28
Yeah it will feel like that, and if the results are positive for a trisomy you will probably feel like life will never be ok again.
After loosing dd2 I couldn't see a world or life that wasn't dark or hopeless.
You do come out the other end, after a good few months of counselling, my due date coming and going life began to find a new normal and I didn't cry every day. I think of dd2 every day, she's always there with me, but I don't cry every day anymore. I can laugh, be happy and find joy in life again.
The start is the hardest bit
OhShutUpThomas · 05/03/2016 19:31
So sorry you're going through this OP.
This thread www.mumsnet.com/Talk/antenatal_tests_choices/2400479-Continuing-a-Pregnancy-with-a-lethal-diagnosis
is by a mother who did continue her pregnancy.
Whatever you decide, there will be support here for you
GOhara · 05/03/2016 19:42
I am preparing myself for a positive trisomy result, I'm very lucky to have found out early. The world does feel very dark. I'm just really hoping that the hospital are good, they seem so touch and go xx
Tollygunge · 05/03/2016 19:48
I'm really sorry you're going through this. I've been there too though for me it wasn't a trisomy but another lethal condition. I have to say I wouldn't have coped without the ARC helpline- it was more than 2 years ago and I still call them from time to time. X
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