Genetic testing results and returning to IVF

The last few weeks have been pretty eventful in fertility terms. Less than a month ago, I was in hospital having surgical removal of our fourth miscarriage. Since then, we’ve had our genetic testing results and an IVF consultation – both things we were expecting a much longer wait for.

Genetic testing of the ‘products of conception’

We were so lucky to have our baby genetically tested, as Stepping Hill hospital (where I was booked for ERPC surgery) stopped all testing some time ago. However, a very proactive bereavement nurse at St Mary’s recurrent miscarriage clinic spoke to Stepping Hill asking for the tissue to be transferred over post-surgery. No promises were made and we were told it would be up to the surgeon on the day.

Fast forward to the morning of the procedure. The surgeon came to the ward for the usual pre-surgery chat. I explained that this was our fourth miscarriage, that our third had been tested and a chromosome abnormality found, and so we really wanted to find a cause – if there was one – this time too.

Straight away, the hugely kind and understanding surgeon phoned St Mary’s hospital and after receiving exact instructions from them, she promised to get the tissue to the other hospital ‘even if she had to get in a taxi and take it there herself’. Tears followed. The consideration she showed that day – in the middle of a pandemic and when she really didn’t have to – was far more than I expected.  

Genetics results

Less than two weeks later, I had an email from our bereavement nurse asking me to call her back urgently. I immediately panicked, imagining that a molar pregnancy had been detected, or that our baby’s tissue hadn’t made it to the other hospital.

Instead, she said the results had come through. We’d been told it would be a 6-9 month wait, so this was entirely unexpected. The nurse told us that this baby had trisomy 18 – a third copy of chromosome 18 – which caused Edwards syndrome. It had been a little boy.

Learning the genetics results was such a massive help. Knowing it wasn’t something my body had done wrong, and that we couldn’t have changed the outcome, brought me such relief. However, it also led me and my husband to more difficult discussions about what to do next.

What shall we do after four miscarriages?

After two confirmed trisomy pregnancies, a pregnancy of unknown location and an untested missed miscarriage at 10 weeks, should we really keep trying? After our recent miscarriage, would we still be eligible for IVF, which we had been approved for just before lockdown? Would donor eggs now be our only option for success? Or should we give up altogether and begin designing a child-free life?

These questions and the conversations that followed were particularly hard for me. At the beginning of pregnancy four, as I felt my anxiety increase to sky-high levels, I’d said to my husband that this pregnancy was my last. Whether it worked or not, I didn’t feel I could continue to put myself through it, physically or emotionally. And as the pregnancy progressed and I felt more and more unwell, I was relieved that whatever the outcome, I wouldn’t have to go through this again.

But with that pregnancy over and still being no closer to a baby, my thoughts are shifting. If my husband wanted to give up, I would agree. But he still has such a strong yearning for us to have a child together that I don’t feel like I can take that chance away – at least, not while it’s still a possibility.

And so we agreed that, if we’re still eligible for NHS-funded IVF, we’ll go ahead with it, but on the proviso that we’ll pay privately for any any embryos to be tested before transfer, to avoid further chromosomally-caused miscarriages, and the associated heartache.

Another IVF consultation

Having just reached this decision, last week we had a surprise phone call from St Mary’s Reproductive Medicine asking if we’d like to go in for an IVF consultation. The following day, we met again with our consultant.

Immediately on entering the office, she said that if we signed our consent forms and had our teach appointment that day, we should be able to begin treatment when my next period arrived. Gutted, I had to explain that we’d just had a miscarriage and that I’d not had a period since the surgery. I also told her that it was another trisomy loss.

She was sympathetic, but practical. She told us we’re still eligible for NHS funding, but will need to wait 1-2 cycles before we can start our IVF cycle.

PGT-A testing and donor eggs

We then discussed other options. Genetic testing was number one on our list, but the consultant told us St Mary’s doesn’t do the type of testing we’d want (while PGT-A is not currently recommended by the HFEA, due to lack of sufficient evidence, this is the option we believe would be most beneficial for us).

She said she’d refer us urgently to the Genetics department to see if they could help, but we don’t think they’ll be able to as, looking at their criteria, I would have to be under 40 (I’m 41) and one of us would need to have a genetic condition that could be passed on to our child (we don’t).

After the consultation, I contacted a clinic that has an agreement with our CCG to ask about transferring NHS funding and paying privately for PGT-A testing. That hope was quickly dashed when the clinic responded that NHS patients are no longer allowed to pay privately for ‘add-ons’. That makes absolutely no sense to me, but rules are rules.

The consultant also promised to speak to someone about funding for donor eggs. Again, I don’t think we’ll be eligible, and after more discussion with my husband, I don’t think I’m ready to go this route. I feel such a strong need for a child that’s biologically both of ours, that while there’s still a chance this can happen, it feels like the only option for me.

Hello waiting, my old friend

So now, we’re back to waiting. Waiting to hear back from the consultant. Waiting for my first post-surgery period. You’d think we’d be quite used to this by now, as waiting is the name of the game when it comes to fertility. But at this stage, I’m impatient. I want to be doing everything we can, as soon as we can. That way, we’ll find out sooner if our dream of having a child is to be.

And if that day arrives, then we’ll know choosing to carry on was the right decision. And if it doesn’t, well, one way or another we can begin to move on.