My name is Robyn Evans Cunningham. I grew up in South Africa, but I have spent my working life in London and now Hong Kong. My career has been centred on financial services, where I have had different roles in investment and private banking, fintech and risk management.
Since Lily’s dramatic arrival, I have given a lot of thought to how parents of preemies and children with CP can be better supported and how they can get access to information they need at the right time – something we have struggled with since the start.
SuperLily is one way in which I am trying to address this issue, by sharing my experiential knowledge.
Also, I recently participated in the McMaster University, CanChild and Kids Brain Health Network Family Engagement in Research Certificate of Completion programme in the Winter 2022 Cohort. Have a look at the Knowledge Translation tool my group developed for other CP parents interested in partnering in research, by clicking on the FER tab in the menu.
OUR STORY SO FAR
The Arrival of a Micro Preemie
One unsuspecting night towards the end of February 2019, Lily was born 3 months early via crash c-section. It was a complicated birth. I lost a lot of blood, she was difficult to take out and the medical team spent 20 minutes resuscitating her.
She suffered severe brain trauma from hypoxia, which means not enough oxygen made it to the cells and tissues and caused damage. She also had bleeding into the brain’s ventricles (grade IV intraventricular haemorrhage) and developed a condition called hydrocephalus, which is a build-up of pressure from fluid in the brain.
She spent 104 days in the neonatal intensive care unit (NICU) and came home, after having brain surgery to manage the hydrocephalus by inserting a special drain to relieve the pressure called a ventriculoperitoneal (or “VP”) shunt.
The days, weeks and months after Lily’s birth were traumatic on many levels, not the least because my husband, Sean, and I struggled to make sense of what was happening both emotionally and practically. We were completely at a loss, ill-equipped and unprepared for a premature baby. We struggled with language and culture in a Chinese hospital. We often felt as though we were operating in a vacuum. It was very isolating and the conservative prognosis we were given by Lily’s doctors was not optimistic about her future.
However, in the end we managed to find our way, to remain hopeful and to figure it out as we went. We soon realised that Lily was getting world class medical care, albeit at times difficult to navigate.
“Don’t Turn Away. Keep your gaze on the bandaged place. That is where the light enters you.” – Rumi
Nearly three years on, as Lily has grown and turned into a pretty little girl, the trauma is beginning to fade. I have a much better handle on how the medical infrastructure in Hong Kong is set up to help families like ours. We are privileged to be supported by an excellent team of therapists and doctors from both Hong Kong and South Africa.
Spastic Triplegic Cerebral Palsy
Lily was about 7-8 months old (adjusted age) when she was diagnosed with CP.
Even though Lily missed early milestones (such as not being able to roll over) it was only when she was about 24 months (adjusted age) that we began to understand how disabling the environment can sometimes be for her. That is why we are always working on ways to make the world more accessible for her and to support her ongoing development.
Like any feisty, funny toddler with ringlets would, she brings us untold amounts of joy and we remain resolute, as any parent would, to help her live her best possible life.
IMPORTANT DISCLAIMER! I am not a medical expert, nor do I pretend to have all the answers. I have done a lot of research to try and ensure the accuracy of the information I provide here, but ultimately SuperLily is a blog and you should not treat this site as an authority on any matter. Please consult registered professionals for medical or therapeutic advice.
There is an African proverb that says it takes a village to raise a child. In Lily’s case, this village has been global, and true to our times, also virtual.
On the day Lily was born, a dear friend dropped everything and came to the hospital, arms full of supplies and food, and cried with and embraced my husband.
My mother and brother, and later one of my sisters, flew half way around the world to be with us.
In South Africa, my other sister’s thoughtfulness and contemplation gave me so much courage and sent much needed positive energy in our direction. She is now Lily’s godmother.
Our midwife came to the hospital and gently cared for me. She was a gem who supported us all the way through the rest of the year.
A friend who had a micro preemie with very similar prognosis to Lily gave me invaluable insight and encouragement that no one else could provide.
The kind words and empathetic ear of a very brave woman who had a preemie in Hong Kong many years ago, helped so much to soothe my grief and heartache.
Messages came daily from family and friends far and wide, wishing us encouragement and strength and love. Once I was discharged, bouquet after bouquet of beautiful flowers arrived at our door.
Our incredible helper, Eden Docil, made sure that the household ran smoothly and lovingly stood by to support us wherever she could.
A very special family in Hong Kong delivered full meals to our door for two weeks.
My mother-in-law arranged prayers for Lily in her UK and SA prayer groups. My mum and sister lit a candle for Lily every day in St John’s Cathedral. A friend’s daughters included Lily in prayers at school.
I know that my much-adored late father is Lily’s guardian angel in the sky.
We were enveloped in love and moral support from far and wide, and whilst much of it came from far away, we drew so much strength from it. There is no question Lily drew strength from it too.
SuperLily is dedicated to all these incredible people.