25 March is Cerebral Palsy Awareness Day! Mum of four Nicola McCoy shares the story of her eight-year-old son, Raphael, who she thought they'd lost at birth but beat all odds and continues to thrive in Singapore with the help of family and community support.
Trigger warning: This article includes mentions of complications at childbirth.
This was my second pregnancy and I thought I had it in the bag! I had manageable morning sickness, my energy levels were great, all my scans and measurements were perfect and I was somehow balancing a life with a husband who traveled frequently, a two-year-old daughter, and a six-month-old puppy without a hitch. I was truly happy, I was loving life and I couldn’t wait to add a baby boy to our beautiful family… That’s until I stopped feeling him at 38 weeks in utero.
At first I thought I was going into labour and that the baby had just slowed down, getting ready for his grand entrance. I had Braxton hicks after Braxton hicks, but after having a big glass of cold orange juice, eating some snacks and repeatedly changing positions with no improvements, I knew something was wrong.
The labour
My husband and I rushed to the hospital, and while they could find the baby’s heartbeat, it wasn’t strong and I ended up having an emergency C-Section. But it was too late. My baby boy was born ghost white and lifeless. There was no delayed cord clamping, skin to skin or tears of joy like I had written in my birth plan. Instead, I heard my baby being resuscitated and I was going into shock. But what followed was far worse.
My son, who we named “Raphael”, and I had had what is called a fetal maternal hemorrhage. This is where the blood from the baby reverses, going back into the placenta and therefore back into me. This explains why he was born looking pale as a sheet, as he had nearly no blood left in him. As a result, Raphael had suffered a catastrophic brain injury and was placed on life support.
At day 10 of Raphy’s life we were told he had severe Cerebral Palsy, caused due to the lack of oxygen getting to his brain when his heart stopped just before he was born. We were told he would more than likely be blind and deaf, be unable to walk or even breathe or swallow on his own, suffer seizures and would lay in a cot until a chest infection would ultimately kill him.
We thought it was goodbye
Our entire world had come crashing down. This was the furthest thing we had planned for our son’s life. It was actually unimaginable. After a huge amount of research, thought and tears, we came to the decision to turn off Raphy’s life support, as we both agreed that this wasn’t a life for our son – it was merely a very sad and cruel existence.
After kissing our baby goodbye and turning off the life support, it was as though a switch went off in Raphy’s heart and he wanted to prove us all wrong. He immediately started to breathe on his own, he opened his eyes and could see, albeit not perfectly. His hearing was 100% and he even started to breastfeed. We knew things were not perfect but we had a new found hope for our boy!
Eight years on…
In the beginning, we had been told it was unlikely he will see his first birthday. Well, here we are, about to celebrate his eighth birthday! Life certainly hasn’t been easy since Raphy was born – in fact it has been incredibly tough and a lot of the time, a sad journey – but we do take the wins and celebrate everything we can.
For years my husband and I grieved the loss of the son we thought we were going to have. The first steps, the first word, the first “I love you”, the football games, the school achievements, even the inevitable broken bones that most boys endure with growing up. But Raphy has taught us so much more in his short (nearly) eight years than I had learned in my entire 33 years before he was born. I have learned to love with my whole heart, I’m present, I live every day as if tomorrow will never come, I’ve put judgement aside, I’ve learned everyone has a story if you stop and listen to them, I try and live by kindness and teach my kids, kindness will always win.
Our journey of acceptance
I try and do as much as I can – because I can, we have the actual ability to do anything, and not everyone is so lucky. But like any grief and loss over time, our grief has changed to acceptance and that acceptance has let us live our life to the fullest. When Raphy chose to live I promised him I would make his time on earth worth it. He will get to experience what makes life fun. He goes to school, playgrounds and waterparks, plays dress up for any and every occasion, he loves the beach, his happy place is flapping around a pool or music class, he eats an array of delicious and indulgent food and travels to unique and exotic places only to always be welcomed and embraced by those who come in contact with him.
Traveling with a child with cerebral palsy
Traveling with Raphy isn’t an easy process at all, but if it means it will add quality to his life, then we will do everything in our power to make it happen. His wonderful carer and his ‘Aunty’ are his angels, always there to help him and to make sure he is included in everything we do.
Being expats living in Singapore, we felt very alone when we were given Raphy’s diagnosis, but there are such wonderful humans in this world who are there and willing to help you. As a family we have learned who our true friends are and also made incredible friends along the way. Along with our beautiful families back in Australia, these friends are the ones who have got us through and they have been there every step of the way. Raphy has an army around him, ‘Raphy’s Angel’s’ or ‘Raphy’s Recruits’ as we like to call them. We have a beautiful community of friends that we have found along the way of Raphy’s journey. It’s incredible how when you start telling your story, you find out how many others have been through something of their own or know someone with a similar story. Most people need support at one time or another and it’s great we can offer that to others and also rely on others for that.
Our family and community
He now has three sisters who are his driving force, his biggest cheerleaders. They are the most beautiful humans we could have asked for; kind, caring, embracing of differences and are compassionate. Everything Raphy has taught them to be.
Raphy has a wonderful school he goes to which has been instrumental in Raphy and our family’s journey. KidsFirst has let Raphael have his own life with his own friends, learn in his own way and receive therapy several times a week. My husband and I are also part of the Facebook group SSNAP – Singapore Special Needs And Parents which offers support, advice from other parents going through a similar journey and also offers a wealth of knowledge and options of support available like therapists, schools, social events, inclusive playgrounds and activities.
Raphy can’t walk or talk, he is wheelchair bound; he can’t feed himself or sit on his own; he has seizures, rarely sleeps through the night and is on a bunch of medications, but what he can do is love and spread positivity, and boy is he handsome when he does it. He is so happy when he is amongst other people who are having fun and living life to their fullest. His smile and happiness are both contagious.
I am forever grateful that he decided life. I truly believe that he came back earthside after he was standing at heaven’s gates to teach us all to choose to be the best versions of ourselves. Choose to be grateful and let go of judging others. You never know what their story is, so be kind.