I desperately needed answers, and nobody could tell me anything

Lisa and Ryan lost their son Dylan at 16 weeks. They self-referred to the Tommy’s clinic at St Thomas’ Hospital where they found the hope to try again. They have just completed their sixth IVF attempt which ended in a chemical pregnancy.

My husband, Ryan had a kidney transplant in 2013. He was prescribed medication which the doctor assured us wouldn’t affect our chances of conceiving. However, after a year of trying with no success, we paid for private tests. The results showed that there is a blockage preventing Ryan’s live sperm leaving his body naturally. It was a real dilemma; he needs the tablets to survive but we had always wanted children. It left us with IVF as our only option to have the family we so wanted.

We had our first NHS funded IVF round in 2017 but it was unsuccessful. In May 2018 my GP found abnormal cells at a routine smear test. I had a biopsy to remove them and gave it no more thought. The following month we had our second fresh cycle and fourth attempt of IVF, self-funded, and I fell pregnant in the July. We were over the moon.

At my scans I asked about the biopsy, but nobody seemed to think that it would be an issue, so I didn’t worry. I was about 13 weeks when the backache and pelvic pressure started but, it being my first pregnancy, I just thought it was normal. It became worse and, two weeks later, I started bleeding.

"Hope for the best but for prepare for tragedy"

When I went to hospital, they told me that I’d been having contractions and ran a high risk of pre-term labour. They took me for surgery a few days later but couldn’t insert a cervical stitch to reduce the risk of my baby coming early because my womb was open, I was too far along. There was a high chance I would miscarry and there was nothing they could do to stop it. The doctors told us to “hope for the best but prepare for tragedy”. It was so difficult to hear.

We were sent home and felt like a ticking time bomb. I looked online and read stories. I knew that, if our baby was born at this point, the hospital couldn’t do anything for us as it was too early, and they’d be too tiny to survive. It felt like the hospital were giving up. I looked on the Tommy’s website and saw stories of women who had been given a cervical stitch, but I knew that, for me, it was too late for that.

It was 3 days later when I delivered our little boy, Dylan, at home with Ryan and my Mum present. The paramedics were fantastic, they took me back to hospital because I couldn’t deliver the placenta. About 24 hours later I was eventually taken to theatre to have a D&C procedure to remove the placenta from my womb.

“I was given a bed on a maternity ward, surrounded by women and their babies.”

What we weren’t prepared for was that Dylan was a baby that was perfectly formed, 10 tiny fingers and 10 tiny toes. He was just very small. We spent hours holding him in the hospital reading him a bedtime story before placing him to rest in a box that the hospital provided with a little teddy bear.

When I went home, I had to physically go through everything women go through after childbirth. I remember my milk coming in and it felt terribly cruel, nothing can prepare you for that. I would wake up convinced I could hear a baby crying, it was a horrible time.

Desperate for answers

Our hospital was unable to confirm what had happened but said that Dylan was a healthy baby and they suspected my cervix was too short, although they could not say for sure.  I asked why it wasn’t picked up on but they told me that, as a first pregnancy, they don’t monitor cervical length as a routine precaution.

The hospital could not give any answers about what we should do next with regards to trying for another baby. Not having answers was incredibly difficult so I took matters into my own hands. I had no contact from the hospital after they discharged me.

Through Instagram, I met a lot of women who had been through IVF, miscarriage and stillbirth. I ended up talking with a woman who went through a very similar experience to my own. She told me that she’d referred herself to Professor Andy Shennan, Clinical Director of Tommy’s Preterm Surveillance Clinic at St Thomas’ Hospital. When she passed on his secretary’s details, I wasn’t really expecting a lot.

“I thought I might get some answers, I desperately needed them, and nobody could tell me anything.”

Our appointment was the week after Dylan’s funeral. Professor Shennan and his team were fantastic, they went through our history and made us feel so positive about the possibility of having a family again. He examined me and said that my cervix was around 2cm too short. But reassured us and said to call when I got pregnant again and he would perform the operation to insert a stitch. A cervical stitch aims to keep the cervix closed during pregnancy.

Searching for hope

That meeting made us feel so much better, made us feel safe again. I don’t think that we’d have considered having a child again if it wasn’t for Professor Shennan. He really did give us back our hope.

For me, one of the most wonderful things about the St Thomas’ clinic was that they included Ryan. We’d been through so much, the IVF, our loss, and the focus was always on me but Professor Shennan and his team really understood that Ryan had been through all of that too. When we lost Dylan, I was so caught up in the physical experience itself, but Ryan was there, along with my Mum. Ryan saw it all and I just can’t imagine how it looked, how it felt for him. He’s been through that trauma too.

We’ve just done another cycle of IVF which hasn’t worked, we have one frozen embryo left. There’s no way we would have done that if it hadn’t been for Professor Shennan and his team, who are experts in their field, and their help in putting a plan in place.

We had to travel over an hour to get to St Thomas’ but we’d have made a much longer journey to hear what we heard. We’re fortunate really, some people don’t have access to that level of expertise which just isn’t available in local hospitals.

For us the care provided at the Tommy’s clinic is fundamental, we simply wouldn’t consider putting ourselves through more IVF without it. IVF was our first challenge and it feels like, now, our challenge is staying pregnant which would be terrifying without the support of the Tommy’s team.

“We’re feeling positive and, as soon as we hear a heartbeat, we will call Professor Shennan.”

You can follow Lisa's journey on her Instagram, @heartache_and_cupcakes

1 in 4 pregnancies end in loss – and most parents never find out why due to a shocking lack of research. It doesn't have to be this way – and Tommy’s research is finding the answers. But research into pregnancy loss is currently seriously underfunded compared to other medical conditions. 

 

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