Post termination for medical reasons support thread?

[whyhastherumgone]

Hi all, sorry if this is the wrong place - just wondered if a thread existed already [had a look but can only find old ones] - if so can someone direct me to it?
If not, does anybody else want a support thread?
We're having to undergo genetic testing before we try again, so would be good to have a space to talk :)

[Catra]

So Ultrasound direct phoned me today and said my result was inconclusive because there was not enough fetal DNA in my blood, meaning that I have to get it redrawn and wait at least another week for the results! Furthermore they can't book me in at my nearest clinic this week as phlebotomist is off sick meaning I'll need to travel to a different city to get it done on Friday which is the last thing I need. I'm just feeling beside myself right now.

[KTD27]

Oh catra. I’m so sorry. I know what an absolute disappointment it must be.

[weasledee]

Oh no catra sorry to hear this! x

[pukekos]

Oh Catra that’s so frustrating! Hope you can get the redraw done without too much hassle. Did they scan you at the same time? Think we’re similar gestation with tfmr for t21 about the same time last year - I had my bloods drawn on Tuesday so anxiously waiting with you.

[Mama0987]

Catra
Hang in there darling, I know the agony of waiting for test results 1st time round, so 2nd time must be unbearable. You are so strong to go through this situation twice, hang on to the hope your baby is healthy because right now you don't know otherwise.

I'm rooting for you Catra
Take care of yourself

Xx

[Catra]

Thank you ladies, your support means a lot.

Pukekos - yes they did scan me at the same time - the baby was growing as expected, had a strong heartbeat and was wriggling around a lot, (but then so was my son who had Downs, so who knows?) I also had an NHS scan at 9 weeks because I'm classed as high risk after what happened before and I have my 12 week NHS scan this coming Monday. I have everything crossed for you and I'm hoping you get your results really soon with a happy outcome - did you opt to find out the sex at the same time? We did. DH and I have a feeling it's a girl although of course we could be completely wrong.

Mama, you're right, waiting for the second time around, especially with this delay is absolute hell. I have to say I have surprised myself with just how strong I've been but what's the alternative?

I would not recommend Ultrasound Direct for the Harmony test. The staff in head office are helpful and sympathetic, but they're chronically understaffed out on site and at every stage both this time and last time round there have been problems which have delayed the process. Back in August when I had my first Harmony test the sonographer was supposedly qualified to take blood, but he ended up sticking the needle straight through my veins in both arms and failed to draw a single drop leaving me in pain and with severe bruising on my arms that lasted over a month. This meant I had to return on another date to give my sample and due to staff absences this delayed my first Harmony test result by three days ...

This time round, I received a phone call less than an hour before my appointment to say that the receptionist was off sick and therefore no one was available to process card payments so could I bring the £400 with me in cash? The amount was higher than my daily withdrawal limit at the bank, so thanks for the notice! Now of course, with the inconclusive blood test result and the staff absences at my clinic meaning that I have to travel to another city, I'm looking at a 9-day delay on these results and all the time my baby is growing and becoming more human-like. I am just hoping and praying that he / she is healthy and I don't have to endure the same nightmare all over again.

[pukekos]

Hope your scan looks good on Monday and can maybe offer some reassurance for you in the meantime. I have my scan booked for Thursday but should hopefully have NIPT results before then. Didn’t opt to find out sex specifically but did opt for XY abnormalities so could potentially find out that way! I’m working this weekend so at least have something to distract me the next. 2 days. Thank you for good wishes, I hope yours works out well too.

[Catra]

Well I had my NHS 12 week scan today and the nuchal fold measurement was 1.8mm, compared to 6.7mm with my T21 pregnancy, so well within the "normal" range this time. The nasal bone was also present which was also a good sign. While I fully appreciate that these factors alone don't put us out of the woods yet, it gave me some relief as these have been the first real indicators of whether there are anomalies with this baby or not.

I also had my blood taken and was told to expect a phone call within 2-3 days giving my my odds with the bloods and the measurement combined ... quite possibly I might have my Harmony results by then anyway, at least, I'm really hoping I'll know for sure by the end of the week. At least in the meantime my fears have been allayed somewhat ...

[Mama0987]

Catra, that's a really positive sign....i will say a little prayer for you. Please keep us updated xx

[pukekos]

Scan sounds really positive Catra. Keeping my fingers crossed for you that you get good news soon!

Got my results this morning, negative for T13, 18 and 21. Indeterminate result for possible XXX on sex chromosomes though. Will soeak to geneticist but was talking to paediatric colleague today and don’t think I’ll pursue it any further.

On the whole I’m very relieved. Have my NT scan on Thursday so still nervous that!

[ANewHope18]

Hello, sad to be joining you but it's good in a way to "meet" others who have been through the same. I had my dating scan last week which didn't go well, CVS results showed my baby has Edwards syndrome. I'll have a tfmr on Friday and will be almost 13 weeks.

I sort of expected the results as the scan gave us little hope but it feels a bit surreal.

I have my fingers crossed for those currently pregnant and for those who are trying again.

[CyclingFanGirl]

Hi Hope, I'm sorry that circumstances have brought you here and I hope you are getting all the support you need at the moment. It's really tough.

Glad to hear your good news catra and pukekos, fingers crossed that all continues to be well.

I am now 16 weeks pregnant, we have an amnio booked for tomorrow after our NT was 3.5mm (right on the borderline). The screening bloods were reassuring, but I am terrified of the same thing happening again, I though about Harmony etc..., but the info we will get from the amnio would exclude the same sort of (really rare) problem that was found at our DBs post-mortem. After the post-mortem and genetic tests for our wee boy we were told that this was a one-off 'unlucky' event that would not happen again, but now it feels like lightening might strike for a second time, even if the final diagnosis turns out to be different.
I know in my heart of hearts that this will be our last pregnancy, I can't put myself through this again mentally or physically, but mostly I can't put our DD(4) through repeated cycles of mummy being sick, mummy being sad and mummy being too exhausted to be a functioning parent.

[KTD27]

Hope I’m so sorry. I wouldn’t wish this experience on anyone in the world.
Big hugs.

[KTD27]

Cycling I hope it goes ok tomorrow and that you get better results than you think.

[weasledee]

Cycling will be thinking of you tomorrow, hope it goes smoothly x

[ANewHope18]

Thank you both.

KTD27 congratulations, you give me hope :)

Cycling, thinking of you today. Fingers crossed x

[CyclingFanGirl]

Thank you everyone. Scan was lovely, everything that they could see was present and correct and the procedure was virtually painless (although a very weird feeling). Uterus felt kind of tight yesterday and had minor twinges, but no pain and today everything seems to have relaxed again. Fingers crossed that we're out of the woods in terms of miscarriage risk, but having another quiet day just in case.
Just the small matter of waiting for results now.

[Catra]

I just wanted to update to say that I finally got my Harmony results back today and I am thrilled to say that we have got the all clear - negative for T13, T18 and T21. We also found out that our instincts were right and we are expecting a little girl!!! I'm elated, crying tears of joy and relief and I can't quite believe it!!

Pukekos - that's wonderful news that your test came back negative too - I am so happy for you.

I'm glad that your amnio went smoothly Cycling and I have everything crossed for you that you'll get a reassuring result and you won't have to go though the same hellish experience you did with your little boy and I did with mine .

I'm so sorry to hear of your T13 results Hope. I was in your shoes with a T21 diagnosis five months ago - I'm thinking of you today during this dark time and I know there is nothing I can say which will lessen your pain, but hopefully my story shows that there is some light at the end of the tunnel - much love to you xx

[CyclingFanGirl]

That is lovely news catra

We got our trisomy results today (only 24hrs after the test!), all normal. Now a 3 week wait for the micro-array and the next anomaly scan, but feeling very relieved and starting to relax a little bit. It feels like there's light at the end of the tunnel.

Hope how are you doing?

What about you KTD27?

[KTD27]

Cycling I bet you’re relieved! Great news.
We are ticking along here. 14 and a bit weeks feels like forever to go until we see baby again at our 20 week scan. Had to go through our NIPT with my midwife this week so she could update the records but all good obviously so was a nice conversation to have instead of our horrid experience in summer.

[ANewHope18]

Thank you Catra, I'm really pleased your results were clear. I can imagine the relief! Same for you cycling, congrats :)

I'm ok, went to the hospital today and was given the first pill. Lots to think about in terms of seeing the baby and making a decision about the remains. The midwife is brilliant, we're lucky in that respect and we will have a follow up in 6 weeks. I'll have close monitoring for any subsequent pregnancies and will be seen by fetal medicine until all is clear. I'm quite happy about this as we will try again in the coming months.

You all give me hope and I am honestly so happy to read that things are progressing well. I'm thinking positive thoughts for each of you xxx

[CyclingFanGirl]

Good luck Hope - thinking of you and hoping that you are recovering well. Glad you have good support.

[ANewHope18]

Thank you cycling

[KTD27]

Sigh. Am struggling at the moment ladies. We are nearing the date we lost our little girl and I’m desperate for some movement - tangible kicks or taps - from this little one to let me know they’re ok in there. Have gone from being absolutely fine to being incredibly anxious that something has happened in there and I won’t know until the 20’week scan. There is NO reason for it other than crappy history and wanting this pregnancy to be ok so so very much.
I have an appointment with my midwife on Monday and am supposed to be listening in to the heartbeat so I will take the opportunity to speak to her. Just really nervous and not sleeping. Eugh. Hate this.

[Catra]

I'm sorry to hear your struggling KTD27. Today would have been our son's due date, so it's been a real mental hurdle for us to get over, especially because our daughter is exactly the same gestation now as our son was when we said goodbye to him (bang on 15 weeks).

In these past few weeks since the first trimester symptoms disappeared ,I've also been feeling anxious, wanting a sign that she is ok. I bought myself a fetal doppler and heard her heartbeat for the first time the other day, which reassured me no end. Of course, I'm still nervous for the 20 week scan which seems an age away ...