This is a story from my career as a midwife, about a baby I had the privilege to meet. It happened a few years ago now but has left an enduring memory. I call her Five o’Eight because I never knew her name and this is the time of her birth. She was born with a terminal condition called Lethal Skeletal Dysplasia and lived three minutes short of an hour. In that short time, she left an incredible impression in my world, one I will never forget. I am running the London marathon next April for my little Five o’Eight and all the children like her who need science to catch up and find cures and treatments for them. I would be so grateful if you can back me on my run with a donation. Small or large it all adds up and makes a huge difference.
Thank you for reading her story.
At nine minutes past five in the morning, I was called to the operating theatre to relieve a midwife who was not feeling well. As I entered the clinical bright environment I felt something unusual. The atmosphere was flat, and still. Not one of the nine people present in the theatre was speaking, all very unusual for a medical operating theatre. I scanned the room quickly to work out what was happening. A baby on the resuscitation table, crying, a good sign. The baby was safely delivered and the paediatrician was attentive but not actually doing anything, another reassuring sign. Mum, a Syrian refugee was lying on the operating table and the surgeon was suturing following a standard delivery. Her eyes were open but no emotion registered on her face, the machines showed her vital signs were good and the suturing looked uncomplicated. Yet still, the staff avoided eye contact and busied themselves in their tasks. Only the father looked over to me, I gestured towards the baby, smiled and congratulated him, he beamed at me and rushed over, thanking me in heavily broken English, this was more like it, perhaps everyone was super tired, it had been a very busy night.
My friend, a usually chipper ODP (operating department assistant), passed by into the anaesthetist room, I followed and he explained in hushed tones that the baby was incompatible with life and hadn’t been expected to have survived after delivery. However, the thing was, and this is the thing about the will to live, the baby did not have the same expectation and was putting up a considerable fight in the other room. He told me that no one knew what to do about it and they were all waiting for the consultant to arrive with a new plan.
Standing next to the baby, I watched her tiny face, heavy brow and eyes screw up as she summoned the energy to wailingly complain, her shallow ribcage heaved with effort and she filled her very small lungs and mewed loudly. The paediatrician was vexed, she told me the new plan was still to do nothing. I noted that doing nothing is a very hard thing for anyone dedicated to healing and caring, the doctor’s eyes filled with tears and she walked away. Following one by one, the other professionals left, along with Dad, who had gone to collect his mother. I found myself alone with mother, baby and my maternity support colleague.
‘Let’s get out of here’ I said, the harsh clinical environment was not right for mum or baby. We helped mum, into a wheelchair, she spoke no English but I don’t really think words would have added anything to the moment. I carefully wrapped baby in blankets and passed her the baby. She refused the baby and turned her head.
So there we were our sad little group, walking slowly in the early hours to the warm, comfortable and dimly lit cocoon of a room at the far end of the corridor. I cuddled baby as we walked and watched her blinking dark eyes getting sleepier and sleepier, she had stopped crying now and a passing midwife paused to exclaim ‘Aww how lovely’ smiling her congratulations to mum.
We reached our sanctuary and helped mum get comfortable on the bed. I tenderly offered the baby to her and again she shook her head crossly and pushed her away, I knelt beside her to show her that her baby looked so beautiful and she needn’t be afraid of what to expect. She didn’t look and abruptly flipped on her side, turning her back on her daughter. I understood, she was afraid and I felt deep respect for the pain she must be in, yet at the same time it was hard to understand and my heart broke for this precious little girl, shunned when she needed her mother the most.
I placed her on the resuscitaire snug in her blanket, put the gentle warming heater on, the dim orange light emitted a comforting glow around her and spilt over into the darkened room. With my stethoscope on her chest, I held her tiny hands and begun to talk to her. I told her about kind and caring people, about funny things that could make you laugh out loud and about love that made your heart feel like it was bursting with joy. I described incredible places like forests, mountains, deserts and oceans and about the marvellous animals that lived in these places and wondrous things about space and the stars. Then I told her a fairytale about a princess who had travelled to a far off land to see these marvellous things and how the princess could only stay for a little while just long enough to take these stories and all the love back home to where she lived happily ever after. I listened as we talked, to the soft rhythmic beating of her heart and felt the quiet gentle rise of her chest. It might have been like slow-motion wings of a butterfly growing softer and softer as it flew away. Becoming quieter and quieter, the pause between beats grew longer and I strained to hear another but it was too far away, just gentle silence - a time between time, peaceful kind of silence and my little Five o’Eight was gone.
Lethal skeletal dysplasias occur in about 1 of every 10,000 births. Skeletal dysplasias are a group of over 350 different conditions associated with abnormalities in the bones of the arms, legs, chest or, sometimes, the skull. Babies with these conditions have short limbs or a short trunk (chest and tummy) which are out of proportion with the rest of the body. Some skeletal dysplasias cause very abnormal bone growth. In these cases, the chest and lungs do not fully develop and the baby cannot survive. These conditions are called lethal skeletal dysplasias.
Any child, any family that has a child with a terminal condition deserve the best possible healthcare. While healthcare has improved dramatically in the last 50 years, there are still no treatments or cures for many children with rare and complex conditions. The only way we can help them is through research.
I am running for my little Five o’Eight and all the children like her who need science to catch up and find cures and treatments for them. I would be so grateful if you can back me on my run with a donation, small or large it all adds up and makes a huge difference. Thank you for reading my story.
About the SPARKS charity
Child health research is severely underfunded — just 5% of what the public and charities spend on research, funds medical research for children. One in three children with a rare condition won’t live to celebrate their fifth birthday. Child health research can save their lives. For critically ill children, there’s no time to lose.
Since 1991, Sparks charity has funded over £30 million of research into over 80 childhood conditions. These include childhood cancers, epilepsy, spina bifida, Crohn’s disease, Down’s syndrome, Krabbe disease, cerebral palsy and the risks associated with premature birth.
Sparks was set up by football legend Jimmy Hill and cricketer Jim Laker, who were grateful for their health and their children’s health. They wanted all children to have the same good start in life, so encouraged their sporting network to raise money for child health research.
Sparks is an acronym for ‘Sports People Aiding Research for Kids’ and much of Sparks’ fundraising has historically revolved around sport.
Sparks has a strong reputation in the child health research community and has supported over 90 research institutions across the UK. Between 2015 and 2018, the charity funded research into conditions that affected 20,000 children in the UK each year.
Sparks don’t receive any government funding so are completely dependent on the donations and fundraising efforts of our generous supporters.
Sparks joined Great Ormond Street Hospital Children’s Charity (GOSH Charity) in January 2017, in a partnership aimed at increasing funding for life-changing child health research.
Sparks funds child health research across the UK, whereas GOSH Charity supports the Great Ormond Street Hospital, research-based at the hospital and research across the UK.