Balanced Robertsonian Translocation / PGT

[Kappi]

Hi all,

I’ve been on these threads for a while - 3 miscarriages, 0 children.

I have been through all the tests - seen many specialists, have been fortunate and received wonderful care throughout. However, I haven’t found a board for those of us with balanced translocations - which I have.

I have a Robertsonian balanced translocation I’ve got- 13:14 which means creating embryos that are viable is a struggle!

we have started Ivf with Pgt testing - only the first round failed - as we never got enough embryos to the testing stage.

I thought I’d document how I get on, in the hope that it gives anyone else out there in the BT boat that they’re not alone.

sending love and comfort to anyone that reads this! It’s a lovely place but we aren’t on our own

x

@Timetotryagain @Moosey898 checking in - how are you ladies doing?

Hey I'm ok thanks. Currently waiting to hear from the genetics lab about our PGT, so that they can run us through the tests they'll do and we can sign consent forms. Looks like we will be starting in February (annoyingly not January but it's just too tight with the Christmas closures). How are you?

@JJ1121 doing well, 26 weeks now! Have you had your first scan?? P.s did you know you can request rhat your clinic requests the gender report from the genetics lab after a succaessful scan. They have to wait until the first scan but the the lab can request the sex report for that particular embryo!

@Moosey898 the genetics lab (cooper genomics) were really good and informative. Thats a shame abour Christmas closures!

@Timetotryagain that's good to hear, thank you. Apparently should hear from them "within the week" from yesterday x

@Timetotryagain sorry for late reply! Yes had a scan at 10 weeks and all went well. Have my 12 week scan at the hospital next week so hoping that goes well. How are you doing??

@Moosey898 wanted to recommend a series called “Alex Jones: Making Babies” it’s free to watch on the “U” app. I found it very informative around IVF.

Hello :)

I thought I would pop on and tell you thay baby arrived safely and well 💖💖

How are you both @JJ1121 @Moosey898

@Timetotryagain congratulations!!! This is so great to hear. Was the birth ok? Hope you and baby are doing well♥️

All good here, currently 22 weeks with a little girl. Feeling very thankful! 😌

@JJ1121 awwwh congratulations that's a lovely milestone to be passed half way!

Yep all good and home with baby now :D feels surreal this time last year I was in my egg collection cycle! (And now I am back to doing self injections for the after birth blood thinners haha)

@Timetotryagain did you have a c section? My friend did as well and she was also on blood thinners. I wonder if it’s standard for anyone who has a c section.

@JJ1121 yeah I did but also 2 friends who recently gave birth vaginally also had them after birth so maybe it's a more standard thing now!

@Timetotryagain good to know. Not looking forward to injections again 😅 are you recovering ok?

Hey @Timetotryagain thanks for asking. Unfortunately our first round didn't give us any genetically normal embryos out of the 5 sent for testing which was devastating. We're gearing up to start round 2 hopefully in April xx

@Moosey898 really sorry to hear that :( out of our 6 only 1 was normal it's such a tricky numbers game :( wishing you all the luck for your next round!!!!

@JJ1121 its slow and painful and breastfeeding is difficult but we're getting there ❤️❤️❤️

@Moosey898 im sorry to hear that as well. My first round I only had one normal that didn’t end up implanting. My second round I had much better results. I do want to add I did a medicated cycle for my second round and this dramatically improved my results. Is this something worth trying or asking your consultant about?

@Timetotryagain ah I can imagine. Well sending you positive vibes! I’m sure within a couple of weeks you’ll be much better!

When you say medicated cycle, what changed between your 2 cycles? And in terms of better results do you mean eggs, blasts or PGT normal?

@Moosey898 yes so my first round of IVF I did the short protocol which is basically following your natural cycle. From that round I had 11 embryos sent away for testing (I was so happy) but after PGT only one came back normal and it was graded BC. I did a transfer (again non medicated according to my natural cycle) and it was a chemical pregnancy that didn’t grow past four weeks.

Second round of IVF I changed clinics and did another collection but this time long protocol or medicated. It basically means they shut down your hormones and then give you the right amount of hormones to simulate an ovulation cycle. From there I got 8 blastocysts, after PGT testing three were normal, all graded AB or AA. First AA embryo I did a non medicated transfer, again it was a chemical. Second embryo did a medicated transfer and it worked! I think my body just reacts better to a medicated cycle despite still having a regular period.

So when I do another transfer in the future, will be doing medicated again for sure. It’s takes more time, more injections and you don’t feel great :( but it’s what made the difference for me.

Might be worth discussing with your consultant to see if they think worth a try.

Ah got you. So I asked my consultant about long protocol (as I was on short protocol) and they said I have no indications to move to long protocol so we're sticking with short. Did you have both PGT-SR and PGT-A testing done on your embryos? We're also NHS patients so unfortunately a bit more limited on options, for example I'm only funded for Ovaleap so can't try different stims meds etc. Cant complain though, 3 rounds funded that we couldn't afford any other way!

I've completely changed my supplements approach though - I'm on melatonin now and NAD+, hoping they will help with the egg quality for the random genetic abnormalities.

And I'm definitely looking at a medicated FET if we get that far. Just makes sense and also would help me feel like it's more under control of that makes sense xx

@Moosey898 yep I did both PGT-A and PGT-SR for my specific translocation. Interestingly, on the second round, of the 8 blastocysts we had, five were actually PGT-A normal but only three of them normal after PGT-SR.

I understand trying to feel more in control. Great that you have three rounds funded! I also read “It Starts with the Egg” and tried to implement a few changes based on the book. (There’s a lot in that book and following everything was a bit unrealistic for me but good to make some changes).

I know you’ll get there eventually! I am rooting for you.

Thank you 🙏🏼 I'm really hoping we get just one embryo this time so we can go for transfer but I know nothing is guaranteed. We've both been optimizing health too, lots of similar stuff to the book you mentioned (even though I haven't read it I've been told I'm coincidentally doing the same from other research - makes me hopeful it's stuff that actually works!).

How are you getting on?

@Moosey898 The odds are in your favor! When do you start second collection? I’m doing well. 24 weeks today. Still hasn’t really sunk in yet, but feeling very grateful after our long journey.

I wish they were! Sadly odds are very much against us, but we carry on.

That's amazing you're at 24 weeks! Such a big milestone. I hope everything continues to go smoothly 🍀 🙏🏼

I'm actually middle of my second round now. Currently going better than my first but only had the one scan so far, next one is tomorrow 🤞🏼

If things carry on at the same pace I should be looking at EC on Monday xx

@Moosey898 thank you 🙏 😊 yes, very true. I guess I meant for most people with a BT they do go on to be successful which I’m hopeful will be the same for you.

ah Monday is less than a week away! Sending you positive vibes.

Yeah - I guess I'm extra unlucky having 2 translocations so my chance is basically half that of most people with a BT🤦🏼‍♀️(why can't I just be boring and average lol) plus we only have 2 IVF rounds left, this one and one more.

So it's scary looking at the end of the road, and knowing everything we've gone through may all be for nothing. Trying to take one day at a time but it's so hard!xx

@Moosey898 ah yes, I forgot you have it on two chromosomes. In your last egg collection, did all five embryos sent away come back unbalanced with your translocation?

2 of them had my issues, 3 were randomly aneuploid! Which is so frustrating. So I've changed supplements etc and hopefully that'll have a positive impact xx