Better care in my pregnancy might have saved Joni’s life
In 2012 I had a Lletz procedure, laser removal of pre-cancerous cells. Then, in 2018 I was told my ovaries looked a little polycystic so I always thought getting pregnant might be tricky.
When I fell pregnant with Joni in 2020 it was a happy surprise but I was a little anxious and it almost felt too good to be true.
But the pregnancy progressed well and after our 20 week scan, I did start to feel more confident. I could never have imagined what was to come.
I noticed a watery discharge at just over 21 weeks but didn’t know it was something to worry about, and did not know then that it was my waters breaking.
On the Monday before Joni was born I noticed blood so called the midwifery line who told me to keep an eye on it, that it could happen sometimes, but I was scared, not reassured.
It was such a cold environment - but warmth was what I really needed because I was terrified
The next evening there was more blood so I called again and the midwife said to call triage at the hospital who told us to come in. We arrived at 9pm and it was such a cold environment and warmth was what I really needed because I was terrified.
When the doctor checked my cervix she said the neck of the womb was closed and, aware of the Lletz, suggested scar tissue could be causing the bleeding. It’s so frustrating, as early on in my next pregnancy my Tommy’s doctor immediately recognised that my cervix was short. I struggle to understand how that doctor didn’t see anything that worried them less than 48 hours before Joni was born. She sent me home, despite signs of early labour.
I knew something terrible was going to happen
The next day I was off work and so anxious. I started cramping and the midwife said to take paracetamol. Then I woke in the early hours with bad pain and feeling pressure, I knew something terrible was going to happen.
I called triage at 1am and will never forget what the midwife said when I told her I felt I was about to go into labour. ‘Even if you did, there’d be nothing we could do’. She said to drink mint tea and take paracetamol.
When contractions started, I called again and I was still on the phone when I gave birth to Joni on my bathroom floor. My screams alerted Chris who called an ambulance before delivering our daughter. I remember the paramedics arriving, one was young and he looked terrified. They took Joni out to the ambulance, I knew she was not going to survive as she was so tiny. She was alive for about 20 minutes, with a heartbeat, before they told us she had died.
The hours that followed were a blur. They took us to hospital and I laid there in a room with Chris and our daughter in a white basket, still wrapped in a towel. I was numb, in shock, I couldn’t process what had happened. After a while of being in A&E the neonatal doctor arrived and noticed that the placenta had not been removed, because of this I had lost a lot of blood. The doctor removed the placenta but I needed to go for a D&C and a blood transfusion.
I do remember one midwife congratulating us which seemed so odd at the time because Joni had died, but I now I really appreciate her acknowledgment that we’d had a baby.
We spent time with Joni but not long because it was never going to be long enough. We had photos and footprints before they took her away. Soon after they came to talk about funeral arrangements and whether we consented to a post mortem. We never thought until then that we would ever be in the position of having to think of these things for our daughter.
The post mortem confirmed that, with my medical history, a short cervix was the likely cause as it opened way too early, an infection ascended and Joni got pneumonia.
Chris battled to have Joni classed as a neonatal death so that we could have a birth and death certificate for her. It shouldn’t have been a battle.
Even though Joni was alive when she was born, she had been noted as a stillbirth. Chris battled to have Joni classed as a neonatal death so that we could have a birth and death certificate for her. It shouldn’t have been a battle.
Tommy's preterm birth clinic
The post-mortem results took 10 weeks, then we had a consultation with a doctor who recommended a stitch in my next pregnancy. During a review of our care, a midwife mentioned the Tommy’s clinic at St Thomas’ Hospital. I did some research and spoke to head midwife Debbie who said to get my GP to refer me.
I was pregnant with George the next month so Tommy’s fast tracked my appointment and at 10 weeks I met Professor Shennan who confirmed I had a short cervix and, a week later, put in a Shirodkar cerclage, a high cervical stitch.
We went every 2 weeks until week 28 and they’d measure my cervix and from week 18 they completed a Fibronectin swab which gave the likelihood of labour within the next 7 days and beyond. Those odds were tracked on an app and seeing that the odds of labour were low was really reassuring.
I felt so supported, so cared for, and it was hard to trust after feeling so let down by medical professionals in my first pregnancy. In the past I blamed myself for not doing more but I made calls when I was worried and trusted the advice I was given. I still can’t believe that nobody picked up on the typical signs of early labour.
The level of care you receive during pregnancy really feels like a postcode lottery, as we know that better care in my first pregnancy may well have saved Joni’s life.
It frustrates me that, in 2012, nobody told me a Lletz procedure could impact me during pregnancy. I did tell my midwife about the Lletz when I was pregnant with Joni and, at a meeting afterwards to discuss the care I’d received, they did say the midwife should have followed it up. I’d like to see the possible impact of the Lletz procedure highlighted, with more education about the impact it can have during pregnancy.
The level of care you receive during pregnancy really feels like a postcode lottery, as we know that better care in my first pregnancy may well have saved Joni’s life.
I also worry that so many people may be getting the wrong information. We were lucky to get good care at Princess Alexandra Hospital in Harlow and to find out about Tommy’s clinic, not all local hospitals seem to know enough about Tommy’s clinics. I was proactive and did my own research, but wonder how many other women in my situation have missed out on this care as they were not aware of it.
When George was born I couldn’t really believe he was here and I am so grateful to everyone who was a part of making that happen. At 70-years-old my mum ran the Asics 10k to raise money for Tommy’s because we owe them so much.
The team at Tommy’s are heroes to us.