Harmony at FMC

[KittyandTeal]

It feels odd to be starting a thread here after all this time!

We lost dd2 to trisomy 18 last year. I'm now pregnant again and as part of our screening we've decided to have the harmony package at the fmc. My viability scan and blood draw is Monday and I'm shitting myself.

I guess I'm just asking for a hand hold and if anyone else has done the package there and what did the think? Was your first scan transvaginal? I had an 8 week tv scan but not sure if it will need to be at 10 weeks?

Sorry for all the questions, I'm normally here trying answer other people's questions 😳

[TeamEponine]

We had it there and they were fantastic. It was a normal scan, not transvaginal. The first scan at 10 weeks wasn't too long. The one at 12 weeks was far more detailed. They will also give you the option of finding out the sex of the baby.

If you have any questions, please do ask!

So sorry for your loss

[KittyandTeal]

Awesome, thank you. I won't bother shaving my legs then :)

I'm a bit wobbly because it was part of the fmc team we saw at Kings who diagnosed dd2 and carried out the tfmr. I know those guys were brilliant.

I wasn't expecting the scan to be too long, I'm guessing there's not a huge amount to see. I was only in 10 mins for my 8 week one but that was enough.

Scans are tough for me as dd2s first anomolies were picked up at our 20 week one and we had a couple of very detailed ones in the following days where I could see a good few of her problems (with explainations)

Did they take any measurements at the 10 week scan? My consultant has confused me as she was talking about them using the nt measurement and bloods like the 12 week ones as well as foetal dna.

I think I just want to know what to expect. Your answers are really helpful.

[TeamEponine]

Just dug out all my forms to check what they did at each scan.

10 weeks...

• gestational sac volume
  
• yolk sac volume
  
• crown-rump length
  
• foetal heart beat/rate
  
• bloods taken for harmony
  

12 weeks...

• foetal heart beat/rate
  
• crown rump length
  
• nuchal translucency
  
• foetal anatomy: skull, brain, spine, heart, stomach, abdomen, bladder, cord, arms and legs
  
• additional markers: nasal bone, tricuspid flow, ductus venous
  

That's everything I have on my paper work, plus the biochemistry results from the harmony.

At the 10 week appointment they explained everything, did the scan and then the bloods. At the 12 week they gave us the harmony results first and then did the detailed scan.

I think that's everything, but if you have any other questions, do ask.

[KittyandTeal]

Thank you so much. You have really put my mind at rest. It's good to know exactly what will happen.

Guess the next thing is just all fingers crossed for negative screening.

[TeamEponine]

I have everything crossed for you!

Good luck, and if you need any hand holding, I'll keep checking back.

[KittyandTeal]

Thank you Team. I think the next 2 weeks will be horrific. Waiting for test results is a really bad memory for me.

I'm trying to focus on the fact that all the doctors have said it is very unlikely to happen again and that trisomies are just shitty luck.

[KittyandTeal]

Sorry, one more questions; do they give you scan pictures? I presume you don't have to pay on top for them?

[TheDisillusionedAnarchist]

Also thinking of you. Recurrence risk is so low. I don't actually know anyone who has had a second baby with a full trisomy 18 or 13.

I know a couple with repeats with partial trisomy but that should have been ruled on on amnio last time.

There are all the stats on reccurrence risk in this document section 2.3 www.ipmms.org/Thesis%20for%20Web/Chapter%202.pdf

[KittyandTeal]

Thanks disillusioned. I've read a fair amount about recurrence rates, some seem to think it's as high at 1:100 over the age of 35 but the specialist has reassured me that's not been proven very accurate. She put my baseline at around 1:1000 before pregnancy (iyswim)

I'm presuming that partial trisomies would also show as high risk on a harmony result?

I think a partial trisomy is tricky as the results are so varying aren't they. Tbh I'm just hoping for a full negative screen but especially negative for 13 and 18.

[KittyandTeal]

That link is very helpful, thank you.

I think, like most stats, sometimes they help reassure me and sometimes I think 'I was that 1:8000 once, why not again'

Pregnancy after loss is bloody hard work!

[TeamEponine]

The stats are on your side, but that won't make it any less nerve wracking I'm afraid.

Yes, we got pictures both times, I think two at the 10 week scan and about four at the 12 week scan. Didn't have to pay for them. They took quite a few and then picked the "best" ones.

[KittyandTeal]

Thanks.

Yeah, it's funny because my current consultant is utterly unbothered by the trisomy risk and is much more concerned about my first dds shoulder dystocia. It's quite reassuring that they're not concerned but it's still what plays on my mind more than anything.

[SummerMonths]

I had Harmony at FMC. They were fab. I had stupidly gone for my NHS nuchal In between the 10 and 12 week Harmony appointments and the NHS gave us a 1 in 10 chance of the baby have Down Syndrome. FMC were so kind and reassuring. They really took time to answer all my questions and check, double check and triple check everything. Thankfully our results came back all clear.

And yes they give you photos both times. And they gave me a DVD of the 12 week scan after I got the all clear from Harmony.

[sparechange]

Massive hugs and crossed fingers, Kitty

The FMC team are so, so used to seeing people back with pregnancies after awful news, and will take every minute they need to measure and show you everything you need to feel happy that things are going well this time.
They tend to do everything abdominally - I have a retro veered uterus and get terrible pregnancy constipation, so most places scan me transvaginally, but FMC have always done abdominal scans and get the pictures and measurements they need, even at 8 and 10 weeks.

Wishing you all the luck in the world for your scan and test

[KittyandTeal]

That's brilliant news summer.

We will luckily not get our nhs screen results until after the harmony results. I made sure of that. I'm completely untrusting of the nhs screen now after they should have picked up a major issue but didn't (the specialist at Kings didn't even scan me before looking at my bloods and telling us more than likely t13 or t18)

[SummerMonths]

Sorry I should have said good luck. The wait will be hard but at least you know you are in great hands. try and book loads of distractions for the wait.

[TheDisillusionedAnarchist]

Combined screening is really inaccurate for T13 and 18, Harmony is so much better. Will be thinking of you, most likely outcome is a healthy baby! Stay busy in the wait

[KittyandTeal]

Thanks. Between work, dd1 and Nhs scans I'll definitely be busy. It's a long 2 weeks though. At least my friends will know why I'm a bit distracted and off

[SummerMonths]

My Harmony results didn't take the full two weeks. I think it was about nine days. Will keep fingers crossed for you to be similarly lucky.

[KittyandTeal]

Did they give them to you before your second appointment then? I'm guessing if they're high risk they wait until you see them so they can explain.

I know from experience that positives take longer than negatives as they have to double check them (hence my rapid results taking 4 rather than 2 days)

[TimeforaDietCoke]

Hi Kitty, best of luck for tomorrow. We went back to the FMC with my subsequent pregnancy following a diagnosis of T13 for our first baby. T13 was suspected at our first scan/blood test appointment (just before 11 weeks if I recall correctly) due to brain abnormalities and confirmed by Professor Nikolaides the following week, when I also had a CVS. They normally wait until after they have scanned you at 12 weeks to give the Harmony results but our lovely doctor did it the other way around for my second pregnancy as I was so nervous. I hope you get some sleep tonight . I think my background risk for T13/18 (combined) was given as 1:138 but was lowered into the low thousands after the scan, blood test and Harmony test.

[SummerMonths]

Kitty - they did give me the Harmony blood results before I came in for the second scan but I think that's because I called them in a panic about my NHS results which had come through in the mean time.

[KittyandTeal]

Thank you dietcoke. Sorry you've been through similar. I'm pretty sure I'll be nervous like that when we get our results. I'm already worried. I'm telling myself as long as it's not a lethal diagnosis I'll be ok, I just think can't loose another one.

Summer my nhs results should be after my harmony results so hopefully will be able to mainly ignore them whatever they say.

Just 2 weeks to wait now!

[TeamEponine]

My NHS results came through after the harmony results, which were all clear. The NHS, however, put me at 1:130, so high risk. Even though I knew everything was fine from the far more accurate harmony test, the NHS result really threw me and I spent ages worrying about it. In retrospect I wish I had only had the FMC analyses as they do everything the NHS does, plus more and with greater accuracy.

Good luck tomorrow Kitty. Will be thinking of you.

[KittyandTeal]

Thank you. I'm expecting the NHS result to come back high risk but tbh it seemed me low risk with dd2 and she had t18 so I don't really trust it.

However, my consultant wants me to have it as although we can ignore the risk assessment the hormone levels can tell more about placental issues etc (which is what they thought my low Papp a was with dd2 until they found a soft marker, that was almost missed too!)

There is a little part of me that thinks fuck it maybe I should just have a cvs and get a full karyotype done but I know logically that there is no need for it.