By Dave Liggins
Every time I look at my tiny daughter, I can’t believe she’s really here. Casey has been a fighter since before she was born, we’re just incredibly grateful that she had the Tommy's team in her corner.
I’ve no doubt that the Placenta Clinic in Manchester, funded by Tommy’s, saved her life.
We had IVF to help us conceive our son Aaron, after Laura was diagnosed with endometriosis and cysts, so when we fell pregnant naturally in January 2015, less than a year after he was born, we were shocked but delighted.
It all went smoothly until our 20 week scan which showed our baby was only measuring at 18 weeks. We were due to fly to Spain for a family holiday the following day, but cancelled our flights and went back to Bolton where a second scan confirmed our fears.
Our baby had fetal growth restriction. She was too small for her gestational age
They reassured us, maybe she’d just be a small baby, and asked us to return in four weeks. They were some of the most anxious weeks of my life.
At that 24 week scan however our daughter measured just 20 weeks and we were referred to the placenta clinic at St Mary’s.
Within days we had our first meeting with Dr Ed Johnson, Dr Jenny Myers and their team. After carrying out tests, they explained there was an issue with Laura’s placenta, that the blood flow through the cord was inconsistent.
The blood flow through the placenta wasn't strong enough
They gently explained that the odds were against us, telling us the worst possible news with such sensitivity and care.
It was at our second appointment at St Mary’s that we were told about the Strider clinical trial to combat fetal growth restriction, in which Laura taking daily Viagra could increase the blood flow to our daughter. They explained that it was a very new trial with only 16 participants in the UK. We signed up to become number 17, we wanted to do anything we could to give our baby a fighting chance.
Strider was a new trial to combat fetal growth restriction and stillbirth
Laura started taking a tablet three times a day when she was 25 weeks pregnant and we went for daily scans to monitor Casey’s progress.
A week into the trial came the worst point of my life, when the doctors explained what we were up against. If the blood flow became worse and they had to deliver Casey weighing less than 400g she had just a 10 to 20% chance of making it. It was so tough to hear but the team gently gave us all the facts and helped us explore all of our options. We had to ask ourselves whether it would be kinder to let Casey slip away naturally rather than subject her to a short, painful life.
I broke down, unable to speak. When you hear the odds are so stacked against you, you feel so hopeless. As a Dad it’s your job to protect your children and there was absolutely nothing I could do for my little girl.
We had to keep fighting for her
Laura and I talked and we felt that while ever Casey had a chance, while ever she was fighting then we had to keep fighting for her. I remember one night we Googled the name Casey and one of the meanings was ‘brave and strong’, it felt like a sign.
By now our scans had gone from daily to every few days and it was one of those scans on the Friday of week 27 that the team discovered some reverse flow, blood pumping in the wrong direction. Laura was given steroid injections in preparation for a C-section, we were terrified. But a scan the following day showed massive improvement so they decided to hold off.
One of the most frightening things at this point was that the reverse blood risk meant Casey could die overnight and, as a result, Laura barely slept.
Every day in the womb improved Casey's chances
It was incredibly stressful, tortuous, living day to day on hope alone. We talked to Ed and he explained how every day in the womb improved Casey’s chances on the outside. We placed our trust, our baby’s life in the hands of the placenta clinic team and it was not misplaced.
We were back to daily scans and on the Thursday of week 29, Ed announced it was time to deliver our girl. They had discovered absent flow in the cord and in Casey’s brain and stomach, the blood was not flowing between heartbeats.
Laura, at 29 weeks, barely had a bump
We were numb as we checked in on the Thursday night. I remember being surrounded by all these heavily pregnant women while Laura, at 29 weeks, barely had a bump.
The caesarean section on the Friday went smoothly, we knew they would have to rush Casey to the neonatal unit immediately, but a midwife returned within minutes to tell us she was fine and weighed 578 grams, bigger than we’d expected.
When we first saw her in the incubator it was difficult to grasp just how tiny she was, she’d have fitted in the palm of my hand, our little fighter was finally here.
Casey was in intensive care at St Mary’s for four weeks, then moved to special care at Bolton hospital before coming home in September at 12 weeks old and weighing 4lb5oz.
If it wasn't for the incredible work of the placenta clinic she wouldn't be here
She’s a feisty little thing, protests at having her nappy changed, and I’ve no doubt she’ll keep us on our toes but we don’t mind one bit.
Looking at her, it’s hard to believe she almost wasn’t here. If it wasn’t for the incredible work of the placenta clinic, we’d have lost her. It was an unbelievably traumatic journey and they were with us every step of the way. They went above and beyond, even coming in on their days off to scan us.
These trials are so vital to families like ours, in giving premature babies a chance. I hadn’t heard of Tommy’s before I found myself in desperate need of their support.
I sat there cuddling my daughter last week, just the two of us, and thought about how close we came to losing her. I’m just so grateful to the placenta clinic team, and to Tommy’s for their passionate and dedicated work, it saved Casey’s life.
It means so much to me that I have taken the worst time in my life and managed to make a positive out of it. I really believe in the work that Tommy's do, and it is a comfort to me that I am able to help in a small way.
Looking back now I realise that my experiences have taught me some valuable lessons. That strength does not have to mean silence; being brave can involve tears and that these babies are chapters of my story.
"There have been times where I've felt like the only person going through this horrible situation (even though I know I'm not) and felt that people just don't know what to say. The more we talk about it the more we can support each other."
"When I crossed the finish line, I was the happiest man on earth. My finish time was 01:43:43; a New Guinness World Record for fastest half marathon in a straitjacket."
The Tommy's Rainbow Clinic is part of the Tommy's Stillbirth Research Centre at St Mary's Hospital in Manchester. It provides specialist care for women who have suffered a previous stillbirth or neonatal death.
The Placenta Clinic, run as part of the Tommy's Stillbirth Research Centre at St Mary's Hospital in Manchester, is the largest placenta-focused research group in the world.
Tommy’s research centre at St Mary’s Hospital opened in 2001 and is now home to around 100 clinicians and scientists researching the causes of stillbirth.
When a baby dies after 24 weeks of gestation, it is called a stillbirth. Around 2.6 million babies are stillborn each year. Tommy’s research is helping to change this.