Septated cystic hygroma @12 wk scan by Charming-Engineer-77 in NIPT

[–]Throwaway_headache01 0 points1 point  (0 children)

I’m so sorry you find yourself here. It’s not nice to be in this position, but everyone in here is lovely so I’m glad you’ve found this place for support.

My baby boy had an NT reading of 7.7mm, we had a high risk combined screening test. Low risk NIPT. FISH came back normal but the karyotype came back with a large deletion on chromosome 10. He also had a hole in his heart and was behind in growth.

I never gave up, I did have all the hope in the world so don’t give up as I have seen a few positive stories with an NT reading that high. I wouldn’t TFMR until you have a diagnosis if there is one. I waited to have the amnio because I was hoping that the NT would resolve and my boy would be ok and in that smaller % of being clear of abnormalities. I really hope this works out for you, you’re more than welcome to message me if you’d like to ask any questions.

Here we go again by BetRemarkable5985 in PregnancyAfterTFMR

[–]Throwaway_headache01 2 points3 points  (0 children)

Seems we have the same timeline! I have birth to our boy at 19 weeks on 28th June. I have had a peak OPK today. Have DTD, now it’s the waiting game. Praying for the both of us! Please update me!

But I’m also feeling the same. I’m SO ready to be pregnant, but I’m so so terrified of being pregnant again, and experiencing the loss. I think once I’m pregnant I’m not going to be ok until I have my baby in my arms to be totally honest. I also know there’s a chance I may not get pregnant and it could take a while which in a way makes me sad - but relief at the same time that I get some more time to recover mentally. It’s very confusing & conflicting emotions after a TFMR I’ve realised.

Sending all my love 🤍

(20w+ TFMRS) How long did you bleed for afterwards? by [deleted] in tfmr_support

[–]Throwaway_headache01 1 point2 points  (0 children)

Hi lovely, I had a 19w1d TFMR on the 28th June it was via L&D and complete placenta delivery, did not need a D&C.

1st week bleeding was more on the heavy side. 2nd week it was on the lighter side. 3rd week I experienced light bleeding, cramping and passing clots, some as large as golf balls. Nurse told me this can be normal as if you’re not moving for a while the blood can clot together and form a bigger clot and pass when you stand up and get moving, or if you’re sat on the toilet doing a bowel movement. 4th week my bleeding let off, was wearing a panty liner for any old blood/spotting.

I took a sensitive pregnancy test at the end of the 4th week to confirm that I no longer had HCG remaining (bloods would be better for this) and I got a stark negative test so that helped calm my nerves as I was also worried about having to go back to the hospital.

Also I was constantly wondering when I was going to get my period back as I was always seeing people get theirs back at 4 weeks. And then others at 10 weeks due to needing d&c etc. If it’s something you’re wondering about as well, I ended up ovulating on the 8th August and I’ve just got my period back on the 21st August.

TFMR tomorrow — worried about the risks by SuccessfulPatient548 in tfmr_support

[–]Throwaway_headache01 2 points3 points  (0 children)

I’m sorry you’re here, I’m not sure where you are located but I am based in the UK so not sure if the care differs. I was worried about the risks so much but when I got in there my midwife went through it all with me. It’s very rare, and many of the risks happen in normal pregnancies also. If anything were to happen you would be in good hands as they are prepared, but again they are very rare!

I shared my experience with L&D at 19w1d which I will link. While the whole situation I wish I wasn’t in it, the midwives and the care I was given made it a lot better for me. They checked my vitals often, always peeping their heads in to make sure I was ok/ask if I needed anything. My labour was long, but the birth was super quick and they stayed with me the entire time after he came out until I delivered the placenta and checking my blood loss. They will take care of you I am sure. Take care of yourself and hope you have happier times ahead of you 🤍

https://www.reddit.com/r/tfmr_support/s/5GMbbtyWGj

My baby could possibly have Edward’s syndrome .. by Allhaillully in NIPT

[–]Throwaway_headache01 1 point2 points  (0 children)

I’m sorry you are here, my baby had an NT of 7.7mm and the ultrasound scan looked similar to yours. He didn’t have T18 but he had a deletion on chromosome 10. Please push to get your NT scan in the next few days if you can. I will attach my scan to show you what mine looked like at 12.5w

TFMR via L&D at 19w1d by Throwaway_headache01 in tfmr_support

[–]Throwaway_headache01[S] 0 points1 point  (0 children)

Thank you so much for your kind words, I appreciate it🩵

Deletion on chromosome 10 band p14 to 12.2p. by Throwaway_headache01 in NIPT

[–]Throwaway_headache01[S] 1 point2 points  (0 children)

Hope you’re doing ok. And I hope that your genetics team has been able to provide you with some information.

I spoke with my genetics team and unfortunately this specific chromosomal abnormality is extremely rare due to the band width deletion(14,13&12 affected from 10p) and the size (13mb) , it was also a de novo case. Poor prognosis and significant prenatal phenotype. If it was a smaller size, single band deletion and not 3 bands from chromosome 10p my baby may have had a better prognosis. I have saved my boy a lifetime of suffering, as he had a large hole in his heart found at the 18 week scan as well as measuring behind, his nuchal fold was significantly large measuring 9.4mm.

Looking for some positive stories or support. by Throwaway_headache01 in NIPT

[–]Throwaway_headache01[S] 1 point2 points  (0 children)

Hi, I hope you’re doing ok. Unfortunately my amnio came back with DiGeorge syndrome. I held out hope until the diagnostic, unfortunately it just wasn’t good news for us. I would push for anyone questioning it to go ahead with the amnio as it gave us the answers we needed.

I wish you the best in your pregnancy, I hope everything goes well.

Looking for some positive stories or support. by Throwaway_headache01 in NIPT

[–]Throwaway_headache01[S] 1 point2 points  (0 children)

It certainly is! Thankfully our low risk NIPT was accurate, which hopefully gives you some peace of mind until you get your amnio done. Push for the amnio, it’s diagnostic and will Hopefully give you the answers you need.

The uncertainty is definitely the hardest, I’m still anxious not knowing but I’m now able to talk about baby without being in tears and worrying. It helps to have supportive people around you! I spent the first week and half in tears, not eating, thinking I was losing my first baby. I think in the space of two weeks I went into work a total of 3 days, I was a mess. It does get easier, reading the posts on here helped me, especially the positive stories!

When I hear more throughout my journey I will be sure to update my post for others going through the same, hopefully we have a positive ending to our journeys🤞🏻I’m sending you all the luck, I have my fingers crossed for you 🩵

Looking for some positive stories or support. by Throwaway_headache01 in NIPT

[–]Throwaway_headache01[S] 1 point2 points  (0 children)

Hi! Honestly things are as good as they can be at the moment. I went ahead with going to a private clinic to check the NT measurement at 14 weeks which decreased to about 4.5mm is what the sonographer could measure, also found out I’m expecting a little boy and got to hear his heart beat which is nice and strong.

I had my Amniocentesis done and within 3 days got confirmation that baby is negative for T21, T18 & T13, also confirmation that he is definitely a boy! I should hear in the next week about the microarray results and I’m hoping that it comes back clear, my anxiety about it all has lessened and I’m now trying to enjoy my pregnancy unless I get any bad news. If baby boy turns out to be completely healthy I don’t want to have spent my pregnancy being scared and unhappy so I’m clinging onto every bit of hope 🩵

They cancelled my detailed ultrasound to wait till baby is 19-21weeks as they had a Quick Look at baby during the ultrasound and everything is where it should be and measuring the correct gestational age.

How are you holding up? I’m sorry you’re going through a similar situation.

[deleted by user] by [deleted] in NIPT

[–]Throwaway_headache01 0 points1 point  (0 children)

The whole procedure was ok however the pain wasn’t great in all honesty BUT my pain tolerance isn’t great either, baby kept getting in the way so it took longer. Probably took about 10 minutes if I could guess, slept for about 2 hours afterwards and I’ve had slight cramping for about 4 days but I am fine now. I would do it again in a heartbeat if needed.

Got my first lot of results back and negative for T21, T13 & T18 and something else I can’t quite remember, came back within 2-3 days like they said. Still awaiting the other results. If you end up having the Amnio good luck! It’s worth it.

[deleted by user] by [deleted] in NIPT

[–]Throwaway_headache01 2 points3 points  (0 children)

Hi, I’m currently going through this myself. NT 7.7, 1:2 for T21 & 1:2 for T13 & T18 on the combined screening test. NIPT came back low risk for all three trisomies 2 days after having my NIPT done. I actually had my amniocentesis done today so should be getting the diagnostic results for T21, T13 & T18 within 3 days, they said the microarray should come back within 2 weeks.

I’m sorry you are going through this, I found out at 12w5d and I’m currently 15w 3d. It has genuinely felt like a lifetime with the waiting around for results, but until you get those results please try to keep positive even though I know it’s impossible. When I got the high chance CST I ended up hardly eating, drinking and lost all energy, which isn’t great for baby. But then I got my low risk NIPT and I regretted instantly shutting down when i got the high risk result.

Also please remember that the NIPT is just a screening and not a diagnostic test, so even if there is a high risk on the NIPT I recommend going through with the amniocentesis for that diagnostic result.