Flora Watkins, a two-year-old Flora Watkins featured her joy in a gut wrenching feature that was made available to YOU. turned to fear and anguish when she found out her newborn baby Romy had cerebral palsy and would never lead a ‘normal’ life. Romy, however, has shocked all expectations.
Romy, a baby girl held by Flora in neonatal intensive-care unit
re you ready?’ I whispered to my daughter, holding out my hands. She nodded her curly haired head while laughing – she is always laughing – and wrapped a pudgy fist around each of my index fingers. ‘Then in we go,’ I said, pushing open the door to the doctor’s office. Romy wore a pair of shiny, rose-gold sandals and proudly marched in, taking deliberate, high steps, like a show horse.
Romy laughed as the doctor leapt up in amazement and came around the desk. The doctor was surprised when she took Romy’s hands off mine and stood for a second, before she fell heavily onto her gingham-clad stomach, before continuing her exploration of the room. ‘That is wonderful to see,’ Romy’s doctor said, visibly overcome. ‘That is really, really wonderful.’
You see, it should have all been different. Romy wasn’t supposed to be able to walk. Due to the pandemic, my husband Nick and I hadn’t seen Dr Harris, her paediatrician, face-to-face for more than 18 months. The last time we’d seen him, she was a tiny bundle and was being discharged from the neonatal intensive care unit (NICU) at a big London hospital, where Romy had spent the first 28 days of her life.
I’ll never forget his last words to us: ‘You’ll take her home and it’ll seem like you have a normal baby… for a while.’ Romy’s life began in the most traumatic and shocking way (which I recounted for YOU magazine in November 2019). After a normal pregnancy she was born by planned caesarean. She became unresponsive and floppy in the birth room. Initially it was thought that the anaesthetic I’d been given had affected her. Romy didn’t respond to treatment. The doctors realized that Romy was suffering from seizures. It was terrifying and depressing. It was the most terrifying time I’ve ever experienced. We couldn’t even hold our much longed-for daughter as she was enclosed in an incubator with tubes down her throat, cannulas piercing her hand and foot and electrodes under her scalp. Her brothers, then aged four and five, who’d been fizzing with excitement about the new baby, had to be kept away, fobbed off with lies we desperately wanted to believe ourselves but couldn’t. ‘Your sister’s not feeling very well. She’ll be home soon.’
Flora and Romy today, with Romy’s sons Gussie (left), Jago and Jago at the Norfolk home of their family.
An MRI scan of Romy’s brain gave us some answers but left many, many more unknowns. Romy suffered a stroke shortly after or during her pregnancy. Pieces of her placenta had broken off, causing a blockage within her brain. The meaning of this was explained by gentle, grave-faced experts. There was extensive damage to the right-hand part of her brain that controls movement – resulting in a lifelong condition called hemiplegia. Her left side would show stiffness and weakness. Her learning challenges and epilepsy might make her more susceptible to developing them. ‘You realise it’s cerebral palsy, don’t you?’ said Nick after they’d gone. I suppose they thought we couldn’t cope with that label just then. Nick and me held hands, sobbing. What happened to our baby, and how could this have happened? Were you mad at her? ‘I just want her to be perfect,’ Nick wept, ‘to have a normal life.’ It might still be possible, we told ourselves, clinging desperately to the idea of our baby we’d had before her birth.
However, there were worse things to come. Another expert came to look at Romy’s scans. This one didn’t have soft words and a bedside manner. Our daughter was quadriplegic because of the extensive brain damage that she saw on scans. She spoke quickly. She’d likely need a wheelchair and have severe learning difficulties. Our little family felt like a bomb had been set off by her words. Plans and dreams reduced to scorched earth, our daughter’s future all darkness and uncertainty.
However, when I reached back to touch my child through her incubator portholes and felt her warmth and humanity I saw a wonderful little girl. The brain damage had caused her hands to become brittle and she was unable to grasp my hand. Our love for her was no less fierce and proud – perhaps even more so.
Nick and I coped with Romy’s diagnosis in different ways. He wanted to know how we could fix it. Guided by Romy’s amazing neurologist and paediatrician in the NICU, Nick read everything he could about brain plasticity in infants. The brain is capable of making new connections if stimulated properly. We sang and read to Romy in her incubator, just as we would have done if she’d been at home and ‘normal’. She was read Goodnight Moon by her brothers and Little Grey Rabbit by her siblings after school.
Romy with physiotherapist Kiki – Flora credits her with helping Romy to thrive.
I wrote about my daughter’s plight for this magazine and was overwhelmed by the outpouring of love and warmth from readers – and buoyed up by the positive stories from mothers of children who defied their initial diagnoses. Babies who’d suffered strokes and bleeds on the brain had gone to Cambridge University, competed at para dressage for their country, had successful careers, gone on to have families of their own.
There were also children with more serious disabilities, such as those who required mobility aids or had learning and vision problems. But thanks to the positive attitude of their parents they were able to live full lives, bring joy to their families, and were able to enjoy the best life possible. ‘What is “normal” anyway?’ asked one friend, whose son has type-1 diabetes. ‘All of us have something.’
One correspondent turned me on to a Mary Oliver poem that became a sort of mantra for me in the early days: ‘I want to believe that the imperfections are nothing – that the light is everything.’ As soon as Romy opened her eyes, once anti-seizure drugs were reduced, she seemed to turn towards the light, taking everything in with her deep, intelligent blue eyes. Her extraordinary doctors and nurses in the NICU held our hands – literally and metaphorically – during those early days.
Flora wrote the first time about Romy in YOU, November 20, 2005
Dr Harris couldn’t have been kinder, inviting Romy’s brothers in for a tour and answering their questions. Whenever I was feeling hopeless, Romy’s wonderfully positive neurologist Dr Ramesh would say, ‘Look at the child not the scans.’ His words became another mantra for us to repeat.
We were warned that Romy would seem a ‘nor mal’ baby at first but that the cerebral palsy would mean she’d be late hitting her milestones (smiling, rolling over, sitting, crawling, etc) or might not reach them at all. Yet bang on six weeks, Romy’s sweet face stretched into a broad smile, quickly followed by deep belly laughs at her big brothers’ antics, as they competed to entertain her.
We were overwhelmed by the support that we received from family and friends. But one unexpected consequence of Romy’s traumatic start to life was the new friendships. Women I’d met just once or twice, who’d been inside a NICU with their own babies, got in touch with empathy, kindness, practical advice and presents for Romy. These friendships are ones I treasure.
Several people who’d reached out through my YOU magazine article recommended that I take Romy to Kiki’s Children’s Clinic which, happily, was close to where we were living at the time in South London. Kiki von Eisenhart Taylor-Goodwin, a physical therapist, came to our aid when Romy turned 12 weeks. Her energy and knowledge energized us. I filmed that first session; you can hear my sobs as Kiki points out the areas where Romy isn’t developing as she should. ‘But we bombard her hemi side with physio,’ she stressed, showing how to raise Romy’s arms on a pillow so she could reach her baby-gym, encouraging her to grasp a rattle with both hands.
Kiki is the one I most credit for Romy’s triumph over early prognoses. By stimulating and encouraging the use of Romy’s hemiplegic limb (and showing us how to do so at home) our daughter rolled over, sat up, crawled and eventually walked within the ‘normal’ parameters. Kiki has become a family friend – just one of the many life-enhancing people Romy has brought into our lives. There’s the team at Small Steps, a charity in Richmond-upon-Thames, that offers free weekly sessions to pre-schoolers with mobility, sensory and other challenges. Heather Bouchier Hayes is a well-known speech therapist. Romy was in terminal illness when she visited her, but she handled her situation with humor and wit. Heather made it clear to me that signing with the Makaton system is important in order to help speech, which can be delayed by cerebral palsy. ‘Romy’s a joy. Do not worry. Make sure you enjoy her,’ she’d say.
Romy’s joy is infectious. Whether that’s because of her disability, or in spite of it, or because she’s been in receipt of so much love, I don’t know. Nick even asked a consultant once if it was ‘normal’ for a child to be this happy. She laughs, waves to strangers, cuddles her dolls and cuddles with them. She is a great listener and can often comfort a crying child.
My surprise was the way her brothers interact with her. They’ll gently hold her right hand out of the way, to encourage her to pick up toys or pieces of fruit with her weaker hemiplegic hand. The Makaton sign will be found on YouTube by the team. I’ve found it very emotional seeing the contestants on Strictly signing with the deaf celebrity Rose Ayling-Ellis. Romy’s condition has made me acutely aware of the need for diversity and inclusivity, for normalising – that word again! – disability and breaking down barriers.
The other day, Romy’s eldest brother Jago said, ‘It’s like she’s forgotten she’s got cerebral palsy,’ as he watched her scrambling up the stairs at bath time. As far as she’s concerned, she doesn’t have any limitations.
Romy’s lessons have been so valuable to us and it has made me feel so fortunate to call her my daughter. Romy made me gentler, thoughtfuler and more sensitive. I’ve had to slow down because of all her appointments and because of her taking a little longer to reach her milestones. That means I have to see everything through her eyes.
I said I’d never cried as much as when our daughter was born with a disability, but two years on, I can honestly say that I’ve never laughed as much, either. She is perfect. As Leonard Cohen put it in his song ‘Anthem’, ‘There is a crack in everything. That’s how the light gets in’