The PRISM trial changed our lives

Our first 2 losses

Dan and I got married on ‘Freedom Day’ following the first lockdown of the COVID-19 pandemic and about a year later we decided to try for a baby. We were very lucky to fall pregnant straight away, but not long after my positive test I started experiencing intense pain and ended up miscarrying.  

I had never expected something like this to happen to me and while I knew being older meant my chances of miscarriage were a bit higher, it was still a massive shock.  

We definitely had a period of grief, and I was very lucky that my manager was supportive which I know a lot of people don’t experience. My personal way of coping was to try again, and we did end up falling pregnant but sadly this one only stayed for a short time too.  

I’m an epidemiologist and have worked a lot with medical literature, so after my second miscarriage I started doing some research around pregnancy loss. Tommy’s came up right away.  

The PRISM trial

While searching through Tommy’s information online, I learned about the PRISM trial and how progesterone might prevent miscarriage. I also found out about the changes to the NICE guidelines that had taken place because of this research. I started reading more, but I wasn’t sure I was eligible for progesterone as I hadn’t had early pregnancy bleeding.  

I really didn’t want to have to have another miscarriage before I could get help  

The timeline to see an NHS consultant was going to be unbearably long so we ended up seeking support through private healthcare to get hold of progesterone.  

My 3rd pregnancy

When I got pregnant for the 3rd time, I took progesterone from the start of pregnancy.  Although I needed to access a private consultation to be initially prescribed the progesterone, my follow-on care was provided by the NHS at The Queen Alexandra Hospital. The care here was exceptional, and the staff were amazing. You could ring the pregnancy unit about any concerns or questions, and I never felt judged or ignored.  

After my losses, I felt hypersensitive to any pain during my pregnancy, and ended up purchasing some private scans to help with my anxiety.  

I felt so supported by the Tommy’s Midwife Helpline

Over the course of my pregnancy, I had started to develop high blood pressure, which was found really by accident when I was having an assessment for something else. I had become concerned about some of my symptoms and I didn’t feel like my GP was taking it seriously, so I ended up calling the Tommy’s Midwife Helpline. Tommy’s midwife Juliette agreed that my symptoms needed to be looked into further and advised me to go back to my team to ask them to review my care.  

Having someone there who was so understanding and supportive was amazing, particularly when you know your options might be limited.

I really appreciated having Juliette there to reassure and support me, and to talk me through what I could do. I spoke with the midwives on the phone and a few times via email which was so valuable.

As I got closer to my due date, the decision was taken to induce me because my blood pressure was a worry, and the baby was actually quite large – they were estimating that he would be 8lbs12!  

Welcoming baby Finn

They started the induction process but he just wasn’t coming, his heart rate dropped a couple of times and his head was just in the wrong position. I was given an epidural but it wasn’t achieving anything, so I was relieved when they said they would do a caesarean section. In the lead up to giving birth I was so scared that he would be stillborn, so all I wanted was for him to come safely and be okay – I didn’t mind how.

The staff were amazing and so kind, so what could have been quite a traumatic experience really wasn’t for me. The worst part was actually the stay in the hospital after the c-section. I had the procedure at about 6pm, and I woke up in the dim hospital light thinking that Finn had gone blue and just screamed and jumped out of bed.  

I worry about him even now he’s here and feel that part of me is still waiting for something to go wrong. The fear you have after you’ve experienced miscarriage never really leaves you.  

Tommy’s changed our narrative and our world    

Dan and I will never be able to explain our gratitude to Tommy’s for all the investment and focus that is put into preventing miscarriage. Through our journey we found lots of people’s stories and it feels that loss is normalised in a way, when it shouldn’t be. When you’re going through a complicated pregnancy journey, it can be difficult to know what to expect and what you can ask for. There are so many guidelines and protocols, and you sometimes feel dismissed by doctors and feel like they are saying there isn’t anything they can do.  

Having the evidence-based research that Tommy’s has done and continues to do gave us something to fall back on.

We obviously can’t say for sure that the progesterone saved my pregnancy, but the fact that we lost 2 before trying progesterone with our third makes me think that it did something to help get Finn here. I think there are a lot of women and birthing people who have taken progesterone who would say the same thing.  

We would encourage anyone going through something like we did to speak to Tommy’s. The midwives and researchers are so knowledgeable, so you know the information you’ll get is rooted in evidence and you can actually speak to someone about your individual situation. There is so much information out there, but Tommy’s does an amazing job of synthesizing it and making it accessible, and you just know that you can trust the advice they are giving you.  

It was really good to be able to talk to Clare when she called the Pregnancy Hub Helpline worried about some symptoms during her pregnancy. As we spoke it became clear that it would be helpful for Clare to speak directly with her maternity team about what she was experiencing. I am glad that Clare was able to trust her instincts and call us, and that we could support her to get the care she needed. It is so lovely to know that baby Finn is safely here, and that Clare got the right specialist help from Tommy’s before and during her pregnancy. - Juliette, Tommy’s midwife

They gave us hope

Tommy’s does so much to raise awareness, not only with information for women and birthing people, but through lobbying government to make changes to maternity care and encouraging employers to be compassionate around pregnancy and loss. To know there is a charity out there that is dedicated to making these changes in the world is really comforting.  

When you experience unexplained loss that doctors can’t really give you a proper reason for, you feel powerless, you feel at the mercy of your own biology in a way. But Tommy’s really empowered me when I felt a bit powerless, they gave us hope that we might be able to experience something other than loss. The results of the PRISM trial really did change our life and we believe it is the reason we have our beautiful son, Finn.