High NT

[elcie1980]

Hi there

Yesterday I went for my first scan, first baby and 39. We had a high NT. The NHS midwife explained that an extensive test wasn't available on NHS. My partner and I were a bit shell shocked. We rang a private clinic and fortunately we were able to book in straight away for a NIFTY test. My partner works abroad so we wanted to start the ball rolling quicker. The clinic put us at ease and did say they see high NT more often than we think... they did say the NT level is higher than expected but the test will give clear answers. The wait is long and painful (7-10days) but at least we can have some answers moving forward.

[Nanmumandmidwife]

What a worrying time for you. What was the NT measurement? What plan did the NHS midwife offer you?

[elcie1980]

My NT was 6...
Midwife was a little rubbish to be honest... it was all doom and gloom and very terminal. We have paid for the NIFTY and the sonographer and nurse were excellent. The sonographer did a very extensive scan... no fluid around heart, rest of baby and the fluid was very focal. The sonographer also showed us a nasal bone which she said was positive. I know we are not out of the woods but we have better information and feel more informed.

[Nanmumandmidwife]

That’s disappointing that you didn’t feel well supported in the NHS.
I assume that it was explained that NT of 6 can be just “unexplained” and baby will have no problems, or can be related to a chromosomal issue or a cardiac issue.
The usual test to be offered in this situation to find out about the chromosomes is an invasive test. That gives a definite answer whether chromosomes are normal or not. The test you have had is limited to looking for the three most common trisomies (Downs, Edwards & Pataus) It cannot give a definite answer, it gives an indication of how likely it is. I trust that this was explained fully? Unfortunately a lot of people do not get a good explanation & that can mean that they end up with false reassurance. If an invasive test is not acceptable to you, NIPT can be a good option, provided you are clear of its limitations.
Has the midwife suggested a special heart scan for your baby at about 17 weeks?
This is going to be a challenging time for you. Please do ask if you want any other info

[elcie1980]

Thank you for information...
Unfortunately the midwife in NHS didn't explain anything... the private clinic explained a lot and hence the reason we felt 'better'. The information that we had was we need these tests to move to the next. We had originally asked to have the CVS ASAP but at the moment we have pushed it back a week to wait for the NIfty test (we have opted for the nifty plus which is tresomies 13,18, 21 but also Turner syndrome and tresomies 9,16 and 22). It's a long 7-10 days wait as all the results come from Japan! I work in the medical field and feel terrible as I have placed a complaint about lack of information and communication.

[Nanmumandmidwife]

I am horrified about the poor quality information you have been given. At a time like this you should not be trying to work it out yourself. Absolutely correct to raise a complaint. I’m happy to discuss further if it would be helpful as I specialise in screening & fetal medicine. PM probably best for privacy

[elcie1980]

Thank you... you have been extremely helpful
I will work out how to PM

[incrediblehux]

I'm sorry you're going through this. Just wanted to say you aren't alone. I'm also 39 and had a scan yesterday with NT of 5.3mm. I'm trying to take each day at a time until we know more. Take care of yourself.

[elcie1980]

sending positive thoughts to you as well... such an anxious time but take time to be well informed (which unfortunately I had to seek privately)

[Nanmumandmidwife]

@incrediblehux as above, I am happy to answer any questions to explore your options if it would help.
@elcie1980 at the top of each post on the right had side in the coloured bar you will see “message poster” or go right o the top of the screen & click on my mumsnet
Two useful websites for you both //www.arc-uk.org and //www.walkingwithyou.org.uk

[DinoGreen]

@elcie1980 sorry you are going through this. It doesn’t sound like you had a good explanation from the NHS.

I had a TFMR in July this year after a T21 diagnosis. The NT measurement at my 12 week scan was 6.5mm. I opted to have a CVS rather than wait for NIPT testing first. I was seen by a specialist screening midwife straight after my scan who gave me lots of information. It is possible for a high NT measurement to be unexplained but I was given a table which showed that in cases where it is higher than 5, the majority of cases are one of the trisonomies or a heart defect, which may or may not be severe.

I hope you get your results quickly. The pp has recommended ARC, they have a helpline you can call and are very knowledgeable and non judgmental. I found them very helpful.

[incrediblehux]

Hi Elcie- just wondering how you're doing and if you have your combined test results back yet.

[elcie1980]

Hi there
My partner phoned today as he is working abroad and feels like he is doing something . The hospital didn’t send my bloods for combined as they new I went to the private clinic for the NIFTY. So wait wait wait

[bal68]

Hi @elcie1980 just wondered if you got your results back? As we are in a similar situation and wanted to know your outcome if you don't mind sharing xx

[elcie1980]

Hi there

So today I went for an Amnio and my NIPTY test results arrived all on the same day. I had a high risk result just for downs. The fetal medicine consultant believes the amino will confirm this.
I am sorry for you going through this as well. My belief system lets me believe that this is all for a reason and Mother Nature has a plan. Don’t get me wrong I also feel I have a bum deal but my mum had a natural miscarriage after a downs result and then my brother came along so I believe in everything happens for a reason x
Wishing you much love and thoughts

[incrediblehux]

Elcie I'm sorry you haven't had better news. I'm expecting NIPT results tomorrow and I feel pretty sure I'll have the same result as you. The uncertainty about what life will be like is really tough. Hope you are being well-looked after.

[elcie1980]

I am sending you lots of love and thoughts...

The wait is excruciating... in some ways it was just a relief to get a definite answer.

[Nanmumandmidwife]

@elcie1980
And @incrediblehux
You are both in my thoughts. Please do get in touch if I can help at all.

[Rubyroost]

@elcie1980 I'm so sorry you're going through this. I had a tfmr last year at 13.5 weeks, baby had hydrops as well as NT of 5.8mm and was very poorly. I decided on termination and on the day of my termination the cvs results came back as t21. I was 40 at the time, conceived at 39. I'm now 41 (conceived at 40) and pregnant again. I'm 23 weeks and fingers crossed all is well. Feel free to pm me if you want to chat about anything. It really is a horrendous time. X

[incrediblehux]

@elcie I've had my NIPT result and it's the same as yours. I've got my first appointment with fetal medicine on Tuesday. Feeling sad but not surprised.

[elcie1980]

I am so sorry to hear your news.... I honestly wasn’t surprised either. The Amnio isn’t bad... I was expecting an afternoon of pain etc but I really didn’t. I am not again expecting anything different from amino. Everyone has their own beliefs but my partner and I have opted for a TFMR next week. Hugs to you

[Conorgog]

Thinking of you both @incrediblehux and @elcie1980, if you have any questions at all feel free to ask, I went through the same thing in July and found the group of ladies on here very supportive, it was so nice to be able to get a heads up on a few things. (- When it’s not something IRL that you discuss openly).

Sending a big hug