Thanks to Tommy’s, we’re moving forwards with joy alongside our grief.

When Simon and I first decided to try for a baby, I thought it might take us a while. We were shocked but very excited when we conceived within a month.

A scan at seven weeks showed our baby’s beautiful heartbeat but also uncovered a large fibroid [non-cancerous growth] in my uterus. We were told it wouldn’t be a problem for the pregnancy, though.

Then, at around eight weeks, I had some bleeding.

Facing surgery

I was referred to the Early Pregnancy Unit for a second scan, which led to another huge shock: I had a cyst the size of a football on my right ovary. There was a risk it might rupture so at 15 weeks’ pregnant I had surgery to remove both the cyst and the ovary.

I couldn’t believe my tiny baby would cope with the anaesthetic and the trauma of surgery so close to where they were growing but we both came through it well.

I had six weeks off work to recover and we began properly planning life with our new baby. I was sure the worst was over, even though there was a small voice at the back of my mind questioning why our baby was small for their gestational age. I’m quite tall so it seemed odd but I was told not to worry.

The agony of uncertainty

All that changed at our 20-week scan.

There was no doubt by then that our baby wasn’t growing as expected, so I was referred to the hospital’s fetal medicine unit. After a wait of almost two weeks, another scan showed there was no fluid around our baby.

They talked through our options but it was made clear to us that whatever we chose to do, our baby couldn’t live.

Simon and I went home in a daze. It was a decision no-one should have to make. In the end, we agreed we would end the pregnancy. 

We knew if our baby was born alive they would survive only briefly because they hadn’t been able to develop properly, and we couldn’t bear the idea of them having to suffer.

We needed a final scan later that week to confirm our next step – and then everything changed again. The consultant told us there was enough amniotic fluid, after all. We found out our baby was a girl. And she had a chance.

We continued with checks for a couple of weeks, each time being told she hadn’t grown much. Then, on 19 August 2022, we went for a scan. I was 26 weeks pregnant. She had gone.

I gave birth to our daughter in the early hours of 21 August 2022 in the bereavement suite at our hospital. She was so tiny, but so perfect. We named her Maggie. We held her, sang to her, read to her, taking in every little bit of her.

Coping with grief

Our healthcare team said the fibroid in my uterus was probably what caused Maggie’s death, as it had diverted nutrients away from her. If I had it removed, there was every chance a second pregnancy would go smoothly.

We still opted for a full post-mortem, just in case there were other factors. We also hoped that by helping with research, we might help spare others from going through the same pain.

We waited six agonising months for the results. 

I was on maternity leave but with no baby. I was consumed by anger and longing. I desperately wanted to be pregnant again, but I wanted the baby we had lost.

Finally, we had some answers

Just before I was due to have surgery to take out the fibroid, we found it wasn’t the cause of Maggie’s death. The post-mortem had uncovered a rare combination of problems with the placenta – complications known as MPFD (massive perivillous fibrin deposition) and CHI (chronic histiocytic intervillositis).

It happens in only around 1 in 10,000 pregnancies but if you’ve been affected once, you're at high risk in future.

We weren’t prepared to take that chance for our child. I threw myself into research and found an incredible community online. One mother who had lost her daughter a month before Maggie died was a huge support; she’s from a medical research background and helped me scour papers relating to MPFD.

Finding Tommy's

Those searches led me to Professor Alex Heazell, director of Tommy’s Maternal and Fetal Health Research Centre in Manchester. I discovered he’d worked with more than 60 women who’d had experiences like mine, with an incredible success rate.

My consultant agreed to refer me to Professor Heazell and when we met him, he put us at ease immediately. He explained there was no guarantee of success but of the 60 or so women he’d treated with MPFD or CHI using a new combination of drugs after a stillbirth, almost 90% had gone on to have a rainbow baby.

Trying again

I had to wait six months after my fibroid removal before trying to conceive again but in February 2024, we finally found ourselves once again staring at a positive test.

Being pregnant after a loss like ours was horribly hard and horribly beautiful.

Alex Heazell was incredible. Between 18 and 34 weeks he saw us five times, personally scanning me and reassuring me that our baby was growing as expected. He did more than anyone to offset my anxiety and I am eternally grateful to him and his team.

On 20th October 2024, our second daughter Phoebe was born alive and well.

She has brought extraordinary happiness into our lives after profound sadness. That sadness will always be there but thanks to Tommy’s, we are moving forwards with joy alongside our grief.