Regent’s Park They're all bouncing around like puppies these days. I too have felt like I must be doing something wrong or my body isn't providing a place where he can thrive.I know deep down this isn't true though. This is so when you speak to others, they immediately understand your situation AND you can see their situation summary. I’m in the same boat as you. Trimester: Second Trimester I don’t remember much of what happened after. Assumed I'd do Amnio (I'm 40) but did the NIPT and was negative for DS and did the blood work with anatomy scan US (NT) and got a 1/297 chance (you are way way way better at 1/10000) and my doc said she would not do Amnio if she were me (I had 2 mc so was anxious to know this is healthy). Those few weeks between getting the enlarged NT result and finding out the results of everything were stressful in ways I cant describe. And medical aid will not cover the costs for any of it unless the NIPT comes back as positive. Use of this site is subject to our terms of use and privacy policy. She went above & beyond to put me at easy & make the journey from Kent as stress free as possible. Honestly, there are many more similarities than differences. I had a great ultrasound technician who went through everything with me. Do you know which hospital your LO will be under? I wouldn't do amnio if the NIPT result is negative. I’m so glad you has such a positive outcome! 10/17 Update: Tuesday we had a consult with a genetic counselor and she mentioned the measurements on my records said the NT was 2.9, NOT 3.9! It will be my first. He’s about to turn 7 and has no health issues at all. My intention is that you have as much information about what may be going on and can make informed decisions with your treatment team moving forward. Please add flair of your results of the NIPT. I have another scan at 16 weeks to monitor. Amnio in invasive and has risks of miscarriage. Diagnosed trisomy 21, we will be moving forward with TFMR. My situation was quite different from yours - we found out at 34 weeks that DS had a blockage in his bowel and had an amnio as it is something that often presents in Down Syndrome foetuses. I should note that I wouldn't have this question if I were younger. To use this feature subscribe to Mumsnet Premium - get first access to new features see fewer ads, and support Mumsnet. I hope everything turns out negative but I also feel completely crushed and haven’t gone a day without crying. I had amnio and everything was fine. The family know i am expecting but after knowing how far off the combined test can be with the NHS, i opted for a private NIPT. 9. 2020 The Birth Company. People with DS are more than 90% LESS likely to die of cancer than those without a bonus chromosome. I just wish it was easier not to blame myself. Just have no idea how to tell everyone that the baby might not be what they expected. Cheshire Knowing what I know now, my blood runs cold when I think of that. My husband keeps saying my OB said something along the same lines but it was all white noise to me once he said the NT was abnormal. Or do I need a definitive answer? This action cannot be undone. The #1 app for tracking pregnancy and baby growth. Press question mark to learn the rest of the keyboard shortcuts. Sigh, at least you can move forward.... my thoughts are with you, it’s going to be rough for a while... New comments cannot be posted and votes cannot be cast. Have a comparison with private healthcare elsewhere and must say that The Birth Company was just how I would like to be treated when I pay for medical services - attentively, calmly, friendly, in a pleasant environment that doesn't look like hospital. My heart goes out to you too, mama. So thankful. My mom was told I had a very low chance of survival due to a heart defect - tetralogy of fallot - and she swears that her prayers saved me. We had the harmony test with the Birth Company and had a reassurance scan with sonographer Kirsty McGarry who was absolutely lovely and really put our minds at rest. Press question mark to learn the rest of the keyboard shortcuts. I wanted to share my story with all the other mamas out here who just received a call from their doctor/midwife/genetic counselor that they tested high risk for trisomy 21 via NIPT. To comment on this thread you need to create a Mumsnet account. I opted not to do further genetic testing. I felt guilt towards him too, that he had to endure so much when he was so tiny. I have been looking at the Downs Syndrome website for information in preparation. Highly recommended. ' I’ll update again when we hear back from the geneticist. We also had an improved NT measurement of ~1.9 at our CVS on Friday. The doctors will have a treatment plan all ready to go. If you feel a message or content violates these standards and would like to request its removal please submit the following information and our moderating team will respond shortly. You will see this come up in posts across this sub. I'm not sure how much you would really need to explain; just be breezy and positive while also being matter-of-fact and others will follow your lead. Talbot Road, You are doing just great.Knowledge is power, and your little one will be in a much better place because the cardiac issue is being picked up before s/he's even here. This is a much better thing than only finding out days or weeks after the birth when the baby goes blue.Heart surgery seems so huge, doesn't it? The guilt about his past health problems is mine to swallow and I can't pass any negativity on to him by holding onto it myself. I guess the main message is that T21 is not a disease and people who have it don't suffer from it. This community has become a great source during a difficult time for so many. I also had regular ultrasounds and nothing was wrong. Press J to jump to the feed. I haven't had a false negative, but I have had the experience of a positive NIPT followed by a negative amniocentesis for T18. Age is the only reason for my high risk. Learn more about, 6 Moms Share Their Real Prenatal Testing Stories, Amnio Decision - for those who have done it. Just hard to imagine at 27 i would be expecting a baby with DS. Very quick. Do you not think after a while it starts to take the fun and excitement out of being pregnant and makes it even more nerve wracking? This action cannot be undone. I can honestly say that despite the good news from the amniocentesis, the NIPT result has put a huge dark cloud over my pregnancy and I have had to seek counselling for my anxiety. Great reaction! I wanted to say that I absolutely shared your feeling that I had somehow done something wrong and made a baby who didn't work properly. NT of 5.1 at 11 weeks and 4.4 at 12 weeks when I got my CVS done (yesterday). The websites of most private providers state that NIPT is ‘99% accurate’ or has ‘99% sensitivity’. Alderley Edge The comments under this are reassuring however the OB and the genetic counselor I saw during my first appointment and my CVS appointment were talking to me as though they’re certain something abnormal will pop up, whether it’s the chromosomes or on the echo at 16 weeks. Obviously we're hoping that he is just a small baby. Professional and friendly ' THIS IS A SCREENING AND NOT A DIAGNOSTIC TEST. Cookies help us deliver our Services. It’s comforting to know that most outcomes are positive. Thankful for all the information this group had provided me. Which is exciting and also very scary!I must admit that I have been nervous for the majority of my pregnancy. Efficient, friendly and always on hand to provide last minute appointments ' Any positive thoughts or advice would be wholeheartedly appreciated. Press question mark to learn the rest of the keyboard shortcuts,, Yes i completely agree with pp. The Brompton and the Evalina have family support groups for child heart patients so I guess other hospitals do too.I used to feel very guilty that I (and genetically it was almost certainly me) had made my son this way.