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NIPT High Chance Result(4 Posts)
This is the first time I've had the courage to post on a forum like this as I've found myself in a very stressful time.
This is my first pregnancy, I'm 24 and never had any health problems. I conceived after 2 months of coming off my implant and the baby was very welcome and positive news for us.
During my dating scan, we opted in for the combined screening test with not much thought, we just accepted it as routine and didn't think the results would come back with anything negative. Sadly, we received a 1 in 3 for T18 and very low PAPP-A of 0.08 which prompted a quick decision for a Harmony test at Portland Hospital.
Once again, the tests have come back with a 99/100 result for T18 and we are now awaiting a referral for amnio at King's Hospital through the NHS. We chose amnio to give us the most accurate result, as through reading various articles, CVS could be done quicker but could potentially not give us a clear picture if in the smallest chance it could be my placenta that's giving off this result.
Both ultrasounds through NHS and private didn't show anything of concern. It was just the blood tests that showed a high risk.
I have reached out to ARC who are the lovliest people I have spoken to so far but as professionals, they can't give me anything hopeful to go by.
This is why I'm reaching out to you, with a couple of questions which may help me understand what's happening in this tough time.
Firstly, has anybody experienced the referral process for amnio to Kings? I asked for the referral a week ago (I'm 15+2 right now) and still haven't heard back with a date for the test. How long do people in this situation wait?
Secondly, has anybody experienced a false positive NIPT, or carried on regardless of the result and seen a baby be born with minor health problems, or is T18 always a very harsh sentence for the child?
Thank you in advance for this, I appreciate it's a very long post.
I'm so sorry that you're going through such a stressful time at the moment. I'm afraid I was given the diagnosis for a different condition so can't offer any help with T18 specifically, other than heart felt empathy. However, in terms of time frames, we went from combined results to nipt results to amnio results within a two week timeframe. Amnio was at St George's and we were offered an appointment the day after receiving nipt results, so it might be worth chasing whoever referred you? I completely empathise with how tough the waiting game is and the last thing you need is the process to be drawn out for any longer than necessary. ARC were helpful for me, as was a bereavement midwife at our local hospital - not necessarily in terms of the aftermath, but in helping me talk through everything I was going through when receiving the results and offering any professional insight she could and chasing appointments / talking me through processes. Have you been put in touch with someone similar?
I'm so sorry you are going through this.
In my case, a large NT measurement at my 12 week scan led to NIPT, which showed a high chance of T21. We waited til 16 weeks for amnio. However the amino couldn't be performed so they offered CVS, which I took. They also did a scan identifying a range of physical issues. We elected for tfmr.
If you feel you need to wait for amino rather than CVS, do. If you are considering a termination you need to have the level of testing you are comfortable with. I accepted the CVS because by that stage it was clear that it was just going to be confirmatory.
I understand that amino isn't offered until last 16w, which may be why you haven't heard anything yet. No harm in phoning to check.
Good luck, and remember ARC are great if you need someone to listen.
Thank you for your responses. I'm going to follow up with the midwife tomorrow as I still haven't heard back from the referral.
As to being put in touch with anyone, I haven't. The whole process has been very 'matter of fact', the information was given to me over the phone and I've not been offered any further support. I will certainly be calling ARC again should the amnio come back with bad news.
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