#stillBORN campaign - Joseph’s story of IUGR
Published on: 19/01/2016
I always wanted to be a mum. But they say nothing truly worthwhile comes easy. That was certainly true for my partner, Richard, and I. I needed fertility treatment to conceive, so was thrilled when I finally found out I was expecting. For nine months, it was a normal pregnancy and I had antenatal care in the community.
Three days after my due date I saw a consultant. She asked me about the baby’s movements and I told her they had changed. They were muted, less frequent, less distinct. She dismissed it. She told me it was because I was ‘having a big baby’ that was engaged in the birth canal and ready to be born. I’d heard in my NCT classes that babies move less towards the end of pregnancy because they’re conserving energy for the birth.
I now know that’s not true. New findings from the University of Leicester back me up. Their audit found that more than 60 per cent of stillbirths in the UK could be avoided – 500 lives a year – if midwives avoided basic errors or simply acted on warnings from parents. Half the stillbirths occurred after women contacted maternity units because they were fearful that their baby’s movements had slowed, changed or stopped.
When I was nine days overdue I woke up and placed my hands on my big bump as I always did. But there was nothing – complete stillness. I told myself it would all be fine and that I’d feel really silly later but went to the maternity unit to be checked out anyway. We were seen at the hospital by a student nurse who was nervous. She kept trying to find a heartbeat and at one point even said: “Did you feel that kick?” In my heart, I think I knew then that my baby was gone. I hadn’t felt the kick, only that poor girl frantically pushing the wand around. She was the only one moving. The consultant arrived and did a scan. I could see the ribcage and a still heart that wasn’t beating. Even so, no one would say those awful words until a second doctor confirmed every parent’s worst nightmare.
We wouldn’t leave the hospital as proud parents, we would leave as a statistic. Our sleepless nights would not be due to midnight feeds. The best days of our lives were behind us and we would have to live with this horrendous agony and empty arms. I couldn’t imagine anything worse, until they told me that I would have to deliver my baby. I begged for a c-section but was assured that this was the best course of action. It was Sunday afternoon. They asked me to come back on Tuesday to be induced and begin the last leg of the journey with our son. In the end, I went in to labour on my own that night. One day too late. I only went back to the hospital the next day when I was 7 cm dilated. There was no rush now. The pain was incredible without drugs, gas or even air but it was a welcome distraction from the heartache.
When Joseph was born, 12 hours later, he was a small but perfect baby at only 5 pounds, even though he was now 10 days overdue. The hospital didn’t have a bereavement suite so they put us in a room that was more like a storage cupboard. My husband slept on the tile floor – no mattress – and I laid on the bed, holding Joseph. There was no cold cot. We could hear monitors, women giving birth and, at one point, people physically fighting about the paternity of a baby who’d just been delivered in the room next door. It was a stark contrast to the emotions in our ‘room’. Everything hurt, mentally and physically.
We had 24 hours to create a lifetime of memories with our son. We named him Joseph after my grandfather, bathed him, sang to him and read him stories. Our family met him and the dreaded phone calls were made.
Eventually we had to say goodbye, as our boy had begun to deteriorate, and without a cold cot we just couldn’t handle his fragile body anymore. One of the last times we held him, my husband made me promise our baby boy that I wouldn’t let his life be a tragedy, that I would go on and live my life in his name. Even now, on some days, that vow is the only thing that keeps me going.
In the aftermath, we discovered via our post mortem that I have Factor V Leiden, a common genetic blood clotting disorder. It’s terrible to think that had I been prescribed something as simple as aspirin, my son could be here. I struggle daily with profound guilt and ‘what ifs’. What if they had taken my reduced movements seriously? What if I’d had a third trimester scan or test? What if they had induced me before he was so far overdue? What if I’d had more hot curries and gone in to labour on my own?
When the hospital did an audit of my care, they found I’d seen a higher than usual turn around of staff – I didn’t meet the same midwife twice. It was noted in my records that Joseph was small but they didn’t know when his growth had tailed off because it wasn’t plotted on any charts. At some visits his growth and my uterus measurements weren’t recorded at all.
He suffered from inter uterine growth restriction (IUGR) but we found out much too late to help him. After Joseph died, we met with the head of midwifery in our trust in southeast London to talk about the changes needed. They agreed and altered their pregnancy notes to include growth charts. We raised £17,000 in the days after Joseph’s death to build an appropriate bereavement room. Our fundraising website received contributions from around the world. As a result, our hospital has “The Quiet Little Room” bereavement suite which has the vital cold cot to extend a family’s time together.
My father told me how proud he was of me and the way we’d coped. But then, days after Joseph died, he had a fatal heart attack at the age of 56. Joseph’s loss was a shock to us all but it was more than my father could handle. I work in bereavement for a military charity but nothing prepares you for losing a child. The nursery is ready and the baby seat already in the car – but there’s no one to put it in. Your heart is full of love and your body is prepared to feed. It’s impossible to reconcile the contradictions between your heart and the reality of missing your precious child.
Joseph might be just another number in the staggering UK stillbirth statistics – we’re among the worst countries in the developing world, with more than 1,000 a year – but he’s our son and our dream. It’s a different kind of unrequited love.