One of the most common things I’ve heard since Elsie was born is often well meant, but tragically born from a real lack of understanding of IUGR and what it really means. I’ve been told so many times that Elsie can’t be IUGR since she was a good weight. There’s nothing wrong with her. All that worrying for nothing. Well, yes. She is here and she is well. But that worrying was never for nothing. That worrying was for my baby. That worrying was for the fact that IUGR is one of the biggest causes of stillbirth in the UK. That worrying was for the implications on her future health, should she make it out of the hospital at all. Elsie was IUGR. But she was also very very lucky. Our care at the hospital meant that we were monitored closely enough to ensure a good outcome, but I will never sit back and assume that our journey is over. If all I need to do now is to raise awareness and educate, then our journey will never be over.
Today I want to share the story of Naomi and Aneurin. Naomi is a very special lady. She got in touch with me during my pregnancy and shared details of her own experience with IUGR. Her support touched me deeply, since her story was so so different to mine. Her unwavering celebrations of Elsie and all her small achievements is amazing. Her joy in our happy story means the world, especially as she tends to her own broken heart. It truly takes a special person to reach out and support another mum to be, when you have lived through the nightmare yourself. Naomi consistently used her experience to lend an ear, offer a shoulder or to simply let me know she was there. I can never thank her enough for that. This is her story.
In 2011, as we embarked on our journey to parenthood, we had never heard of IUGR (inter-uterine growth restriction). Four years on it is a condition that has changed our lives and left a deep mark on all of us.
The first 12 weeks of pregnancy gave us no indication of the difficulties we were to face. A happy scan at 10.5 weeks, and the realisation that this was real. We were going to be parents.
At 15 weeks everything changed. Screening results brought worrying news. For the first (but not last) time, we were shuffled into a small, windowless room to be given bad news. We then endured five weeks of tests, worries and sleepless nights.
At the 20 week scan, it was clear, early on, that something was wrong, very wrong. Lots of whispers between the Consultant and the Sonographer, before being shuffled into another small room to be given more bad news.
The two overriding emotions of my IUGR pregnancy were uncertainty and fear. We were told the most likely outcome was inter-uterine demise. All we could do was see how the pregnancy developed. We would be monitored, and if he didn’t die, eventually there would be a point where we would have to deliver early.
We slowly edged our way to key milestones. At 24 weeks when delivery become an option, we visited the Neonatal Unit to prepare us for what would await us if he defied the odds and was born alive.
Every day inside, gave him a better chance of survival. Every day was a tiny victory. Every day I carefully logged the baby’s kicks. Every day I woke up scared of what the day might bring. Every day felt like the longest day.
More scans, more traces, more hospital admissions. Until I was admitted to hospital for the last time. A bad scan, meant delivery was looming. It was Easter weekend, and our Fetal Medicine team were going on leave. They didn’t expect to see us back in clinic again. Yet, a week later, as I walked down from my hospital bed to be greeted by our usual team, I felt triumphant. We had survived the week, and he was still fighting.
Yet, we knew we were living on borrowed time. I knew we couldn’t chance it much longer.
Then, one Monday morning, clinic was running late. Later than late. At 3:30 we were finally seen….and we were told that the time had come. At 30 weeks we had chanced it long enough. I had my first injection of steroids and delivery was booked for the Wednesday. We just had to hope he wouldn’t take a turn for the worse.
I barely slept the night before. Because of his size, it was a C-Section. I had started to come to terms with this, weeks before, when we were advised it was likely to be the only option. We were third on the list….waiting, waiting, waiting…finally the call to come up to theatre. And then we were in. It’s only after having my second son, that I realise quite how different the atmosphere in the theatre was compared to a ‘standard’ delivery. There was no music and no commentary on what was happening.
As was pulled out, no-one told us…..once he was out, and they knew he was alive, we were told. My partner had the opportunity to see him, but all I saw was the corner of the incubator as it was wheeled out.
Then the strange experience of being sewn up, knowing my first born, my son, was somewhere else in the hospital. Knowing that if anything happened, I would never have seen him alive.
Once I was in recovery, the Neonatal Unit brought us a picture of him. Such a small gesture, but so important to someone who hadn’t yet seen their son. And then the moment, when I was allowed to go up and see him. Still one of the happiest moments of my life. To see this little baby, this brave fighter, who in a very short time had fought harder than most people do in a long full life, alive and very definitely kicking his wires out of his way, was so unbelievably overwhelming. He had wanted this chance, he had done everything he could for this chance, and we were very lucky that the NHS was in a position to ensure he had every opportunity.
After a decent 24 hours, things slowly got bleaker, until we had to make the heart-rending decision to turn off his life support. The saddest moment of my life, the hardest moment of my life.
After he died, the Registrar came to tell us what he was putting on the death certificate. While Sepsis (another condition I had never heard of) had caused the change in his fortunes it was not the primary cause of death. That was IUGR. Four little letters that have robbed us of our son and robbed our Rainbow, Idris, of his big brother. IUGR. Four little letters that broke my heart.
Aneurin Fred Owens
24 April 2012 – 27 April 2012.
“In might a man.
A youth in years.” Aneirin, Y Goddodin