Awful prognosis. NT, hydrops, Down's syndrome, Hand hold needed

[oneweecraw]

Hi everyone.
I am currently 13 weeks pregnant with my first baby after 2 years of trying. I'm 35 and so far everything has been going perfectly. I had two private scans which revealed babies heart beat from 6 weeks and baby seemed to be developing perfectly. I had my 12 weeks scan last week and baby was moving so much that I was booked in for a rescan. At the rescan on Thursday, baby was bang on their dates, measurements were good and heart beat was strong. Then disaster struck. The sonographer revealed the nuchal thickness was 6.4mm. My bloods were fast tracked and an appointment was made for me yesterday at fetal
Medicine. We were at the fetal
Medicine clinic for 4 hours. A more thorough scan was done again suggesting babies organs and measurements were all good. This time they noticed some oedema on babies stomach and said fetal hydrops was also present. By this point, my bloods were back. I was told trisomy 13 and 18 were 1:884 and trisomy 21 was 1:2. The relief was actually huge. Down syndrome seemed like a real option. I was then advised to have a CVS procedure done. This was honestly horrific but they managed to get some great sample of placenta so we now await the results. The first part confirming Ds diagnosis should hopefully be here by Monday. The second part, the following week. Babies heart looked good but I've had an appointment made at a fetal cardiac specialist to see if the heart is the cause for the problems. As if things couldn't get worse, I was then told, as a result of the fetal hydrops, baby could randomly miscarry over the next few weeks. I suppose I'm just looking for anyone who can share anything with me. I've trawled the boards and found the odd few positive story. I feel like I can't breathe. My life has been shattered and I'm so devastated.

It's ok to be worried and scared, I had a similar experience when my first viable pregnancy after 6 yrs of TTC revealed a high NT. I knew that age was not in my favour and we stopped all further investigations as we just felt the pregnancy was our dream and parenting often follows a different path to the planned route.

Take a breath, consider what your concerns are and also the options available. It's positive the heart looked good and for us that was a massive thing, once we knew the heart was ok we just accepted the risks and continued the pregnancy without further tests, despite much pressure from the system to continue. We felt this might be our 1 chance to have a family and we would just deal with any issues as they arose.

DC is now a teen, didn't have DS but does have SEN which isn't identified during pregnancy.

Thank you so much for your reply. This has made me feel much more positive. Xx

Hello, I just wondered how you got on? I’ve had a similar experience.

I went for my 12 week scan and showed a high NT but all structure of baby okay in regards to growth, nose bone, arms, legs, head etc. But because of high NT they have taken my bloods and then referred me for a CVS today in london which they confirmed high NT and fluid on chest exact words were; generalised skin oedema and fluid in the fetal chest (hydrops). We suspect a cardiac anomaly but the small size of the baby limits the ability to diagnose this for certain. I’ve only just turned 24 years old and this just doesn’t seem right to me nor fair due to my luck the last few years. I have got a lot of satisfaction out of some of the replies on here but i can only see some dated in 2011-2014 but i am new to this. I just wondered if anyone had any advice, had anything similar and it’s all very grey at the moment and they seem quite negative about the high NT which i am prepared for the worse but just want to hold some hope as really don’t want to loose the baby. Thanks x

Hi, I'm so sorry for the delay in replying? How are you?
Unfortunately, my little girl was born at 16 weeks. We had to have a TFMR she did have Down syndrome but that didn't bother us, she developed fetal hydrops and was in multi organ failure. It's been the worst few months. I think of her every day.
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