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

We had 6 sent, 4 had my transloxation and one had random issue which was annoying.

I hope this egg collection and numbers go well for you 🙏🙏🙏

How did your EC go @Moosey898

10 eggs, 7 fertilized, 6 at day 3 but only 2 days 5 suitable for biopsy 😔 waiting to hear if we get any more tomorrow. Absolutely gutted, we got 5 blasts from 7 eggs last time so it feels like an utter failure.

2 is basically a case of we can already prepare for next round because the chances of getting a genetically normal embryo are absolutely tiny.

@Moosey898 I can understand how that’s a bit discouraging but staying hopeful for you! I imagine you find out biopsy results in a couple weeks?

Yeah took 2 weeks last time (from Monday). It's just so unlikely, I'm preparing mentally and diary wise for our final round x

Hope you’re doing ok @Moosey898 - today is day 6 for me following our second round and we’ve had a similar result, 2 embryos biopsied yesterday from 11 eggs collected. We had 6 left in culture overnight but heard this morning that they’ve not developed any further.

Just wanted to let you know you weren’t alone, I’m also mentally writing off this cycle - however, then I feel really guilty that I’m giving up hope as if that’s somehow influencing the outcome! It’s a rollercoaster for sure xx

Ugh I am so so sorry 😔 this process is utterly soul destroying isn't it. Such similar results to us as well!

It's hard not to write it off though isn't it, the probability of getting a genetically normal embryo back is just so small.

I'm so grateful for NHS funding but also it's frustrating - if we were private I would be planning for my next cycle already, but we have to wait for the PGT results instead which is just super frustrating. With only one round left as well I've started to look at costs for private and I just don't know how we would be able to afford any more rounds, unless we won the lottery or someone in our families got super generous all of a sudden!

Sending you the biggest hug. The waiting followed by the let down is horrible xx

Hi all, hope everyone is doing ok and thanks
Moosey for your last message. I wanted to share my update and see if anyone had any advice/ similar experiences they wouldn’t mind sharing.

As expected, neither embryo from our second cycle was usable - both unbalanced. We will have a follow up appointment with the hospital and I’m not sure what questions to ask before trying another round.

For background - we’ve had two cycles with the same medication and doses - menopur and gonal-f. Cycle 1 had 14 eggs, all mature, 13 fertilise and 4 blastocysts. Cycle 2 had 11 eggs, all mature, 9 fertilise and 2 blastocysts. Across the 2 cycles, 4 unbalanced embryos and 2 with random issues picked up by PGT-A.

Currently 37 (wishing we’d started treatment earlier but that’s another story). Haven’t tried naturally in between IVF cycles as the risk of miscarriage is so high.

For those that have had multiple cycles - did anything change in your protocol to try and improve numbers? I feel like we’ve seen big drop offs between fertilisation and blastocyst stage. I changed supplements for cycle 2 to Ovum, haven’t had any guidance from the clinic on supplements other than take folic acid and vitamin D.

If you were me, what would you ask, try or do differently? Has anyone researched into going abroad? I know it’s a bit weird to ask on a forum, it’s so hard to find others going through the same issue. Thanks xx

@PGTSrsly thanks for sharing your story. I’m sorry to hear about your situation. It is as Moosey mentioned truly soul destroying. I hope you have a good support system around you ♥️

I think I mentioned in earlier posts but doing a medicated egg collection (despite my hormones being fine and ovulating consistently) is what gave me dramatically better results. I also did a medicated transfer. I’m currently 29 weeks after three natural miscarriages, five chemical pregnancies, two egg collections and four transfers (3 of which were unmedicated). Is this something you’ve tried or spoken to your doctor about?

I also switched to Fostimon and Meriofert for my stimming medications.

I'm so sorry - our stories are so similar! We've had 2 cycles, same protocol for both.
Cycle 1 - 7 eggs, 6 fertilized, 5 blasts
Cycle 2 - 10 eggs, 7 fertilized, 2 blasts
All abnormal - of the 7, 4 had my translocations and 3 were randomly aneuploid.

My consultant said that they won't change the protocol because I'm responding "as expected" plus IVF funding only covers certain meds so can't really swap anything. Essentially my age and genetic diagnosis means my results are bang on average, just average unfortunately means no good embryo. I am holding on to a tiny, tiny bit of hope for our third collection but I'm more expecting it not to work x

Thank you @JJ1121 and @Moosey898 ❤

I should have said in my post, both cycles have been medicated. I feel like we’ve been fortunate with the number of mature eggs collected and fertilisation rates, it’s the drop off before blastocyst stage that’s got me wondering - it seems to be from day 4 that they stop progressing. I’ll ask about different medication options at our appointment to see what they say.

I think it will be a similar case for me Moosey that our results are within an average range so there won’t be much else they can offer. Just wish there was something they could do to get a few more chances for success out of each cycle. The random aneuploidies are the worst - I was completely shocked by that during cycle 1, I was so focused on the translocation I forgot about everything else that could go wrong.

Do you have a date for your next round? Xx

Hi all, hope you don’t mind me jumping on, I’ve been reading your posts as have just been told I have a balanced robertsonian translocation. No idea of our next steps yet as we have just had IVF funding approved before having the karyotyping, so not sure what it means and whether we’ll have to go private. From what I’ve read it’s a lengthy process with the nhs?
Will follow along if that’s ok! ☺️

Hi @26birdsong hope you’re doing ok. I think with the NHS you get three free rounds of funding. I actually went with a private clinic so can’t speak to how long the process takes with the NHS. I’m 35 weeks now after transferring one of our balanced embryos so feeling very thankful. Wishing you best of luck on your journey!

Congratulations!!!

I’ve been researching and I understand you get 3 rounds, but if you have private it’s taken from your 3. So we might start the nhs process and do a private round in the meantime, even if it eats into some allowance. We’ve been TTC for 2.5 years and I’m 34 so although it’s not urgent, I don’t want to waste any time. I think emotionally I can’t wait much longer!! I understand it can take multiple retrievals/transfers though so trying to be realistic.
I’ve had at least 7 chemicals so I think a natural conception is unlikely.

I wondered if anyone had been with TFP Oxford, either as an nhs patient or private?

Hi, I’m just hopping on as I’ve been watching this thread.
I have a balanced translocation, we had nhs funding and used TFP Oxford. The process was much quicker than I expected, and I can’t fault the team we were under. We had one retrieval, had 5 embryos that made it to day 5, we only had 1 that was balanced that we transferred with a medicated cycle and I’m currently 23 weeks pregnant.

Once the referral was sent for funding the clinic were pretty quick at getting us in for all of our appointments.

Oh that is great to hear and congratulations!!

did you have a long wait before the referral? I read you have to be seen by a genetics clinic and they make the referral for funding, which looked like potentially a slow process?

We were referred to genetics, from memory we had an appointment within a month or so. Our referral for funding was delayed as my BMI had to be below 30. We were contacted by the IVF clinic in February to say funding was being sent off, and we had our first egg retrieval in the October, we delayed this by around 2 months as I was starting a new job. They were very on the ball once funding had been approved.

Ah thank you, this is so so helpful ☺️

We’ve had a call with genetics and have a follow up appointment, where she said they can do the funding application. She just needs to check if the lab would want to treat my karyotype test on the nhs. Hopefully not! We are looking at TFP Oxford and they sent over the timescales which helped (although still feels ages to wait, they said 6 months from referral to transfer, but could be worse, and I know we might need to do multiple rounds and no success guaranteed)

@26birdsong good luck! Hope you’ve made some progress.