When i was going through the hell of screen tests, coming on here and reading other people’s stories really helped me. Even though our journey ended in the worst way, the waiting time was full of hope, which was better than being full of dread for me.
I promised myself that I’d share my story so there’s as much info out there as possible for other people - if I learned anything in this time it is how wildly underresearched women’s health was.
This is going to be very long and detailed of the full process we endured.
we got pregnant instantly, first try (33 f & 35 m) very planned and wanted pregnancy. in week 6 I became severely poorly, the sickness and nausea was constant. I assumed I had Hyperemesis - I didn’t know how the baby would survive the lack of nutrition. It was horrific. My partner became my carer over night. I ended up getting cyclizine from the doctor which stopped the sickness thank god - I do think I have now developed a fear of being sick or feeling sick.
I was off work from week 7 of pregnancy. We got an early scan because we assumed I was having twins because of the sickness. But just one. And all was fine. We got to our 12 week scan. I still wasn’t well at this point. The NHS scan was cold - not happy and joyful. Just felt dark looking back. they said everything looked as expected. The nuchal translucancy was 1mm (perfect) and they said it was fine - this gave us a green light to announce. I actually felt pressured to announce due to how sick I’d been and so many people had asked me what was wrong - I just wanted the news out there and to get it over with (this makes me sad looking back cuz it was not done for happy reasons).
exactly one week later we got a call to say we had a 1 in 5 risk of Down syndrome. Now what confuses me is how they told me the baby was 80% okay when actually it was 100% not okay? I think those probabilities need to be abolished and just go straight to NIPT. Send my taxes there. We immediately thought we’d keep the baby but after so much research we realised how many health problems they could potentially face - the unknown was so risky.
my combined test results were low Papp-a (0.32 MoM) and VERY high hCG (6.31 MoM) - I only found about 2 other threads with severely high hCG levels like this. 6.31 is six times higher than what a normal level would be. It was extremely high. Even if my baby wasn’t poorly, my pregnancy was going to be hell - risk of late miscarriage. Preterm labour and preeclampsia.
we got the NIPT the next day (thursday) and by Tuesday night they rang to say it was positive (99% accurate).
a lot of our hope over these two weeks held onto our nuchal translucency being 1mm.
we went for the CVS and I would say going to the dentist was worse. It was one little scratch. A second of pressure. And then they actually like pump the placenta out which they didn’t warn me about lol. But no pain. Was totally fine. And like I said, dental procedures hurt more.
we got the results the next day and got the diagnosis. We also seen excess fluid around brain and the head was measuring 2.5 weeks behind.
we chose to TFMR and I really wanted a d&c - I wanted to treat it like a medical procedure in that I had been so unwell for two months (bed bound I might add) and I would get an op to remove it to make me better. But there was a THREE week wait for my gestation. I was 15 weeks at this point. I could not wait that long. At all. No way. And then do the op at 19 weeks? It seemed insane. So I had to do the medical induction.
taking the first pill was the hardest thing I’ve ever done. I was heartbroken. Two days later I went in at 12 for the pessaries. They were put in at 1pm and it was over by 5:20pm.
after half an hour I had bad period pains, then another half an hour I got contractions. These very quickly became constant. I didn’t have any break it was a constant contraction. It was agony and I was sick from the pain cuz they couldn’t get the injection of pain killers to me quick enough. They injected me at 4:30 ish and I was pain free in minutes. I even napped for 30 mins. This worried me that I’d stopped all progress but when I woke up I went to the toilet and it slipped out and I felt two passing through. The baby then the placenta. My baby should have Measured the size of an apple at this stage but I really felt like it was inanely smaller than that. (Expected)
We chose to not see them or find out the gender. This was personal to us and we had found our pregnancy very different to anyone we spoke to or read about. Because I was so poorly, we didn’t actually ever get a chance to be excited. We couldn’t celebrate. We had no good times in the entire three months. So we hadn’t really attached to the pregnancy at all. we were obviously so devastated but we tried so hard to be as logical as we could. It really helped us through. I have since said the sickness was probably a blessing in the end because it meant I couldn’t buy anything or see anyone to make baby plans etc.
we want to try again asap (even before my next period after the loss) but we’re petrified this will happen again. We will be offered early scans and early NIPT which is great but we’re just praying for another quick pregnancy and a healthy baby this Time. Everything I’ve read says it’s unlikely to be diagnosed twice but when we never imagined this happening to us it’s hard not to start imagining other things we assume won’t happen.
we told ourselves every single day throughout this hell ‘things could be worse’. We tried so hard to see any light possible in what was a living nightmare.
i owe any strength I had through this to my partner. He has been my saving grace and I feel so lucky to have had someone like him by my side. If anyone has any questions I’m super happy to discuss and talk. Especially as it’s hard to find anyone who’s going though similar.
oh one doctor also said to me the sickness was from the high hCG levels from the DS and I won’t feel this sick next time.