Oscar Roger Griffiths was born on 11.10.2013 via an emergency Caesarean. Everything had been ticking along nicely with my pregnancy and at ten days overdue my contractions began. All was good… until it wasn’t!
Alarm bells started ringing- people were shouting and I was told I was going to have an emergency caesarean. Oscar was born floppy, blue and un-responsive. The doctors and nurses revived him at 8 minutes old and we were advised Oscar had not been breathing in the womb for at least 20 minutes.
He was rushed off to the neonatal intensive care unit, put on a ventilator and then transferred to a specialist hospital in London for a treatment known as ‘Cooling’. This treatment is given in an attempt to limit the extent of any brain damaged caused by the lack of oxygen at birth.
The next few days were a blur; I discharged myself from hospital the next morning to travel up to London and be with Oscar. Paul and I sat by his little incubator every day, reading him stories, telling him about ourselves and his new family .We were in constant communication with the doctors about Oscars treatment.
The cooling treatment lasts 72 hours. On Oscar’s third day the cooling was stopped and the doctors gave us the devastating news that Oscar was unlikely to survive. His brain was too damaged and he was still relying on the ventilator to breathe. We were told that by keeping him alive we were prolonging his suffering. No parent can ever be prepared to hear those words, and no words will do justice to our heartbreak.
Over the next few days we arranged for our close family members to come and see Oscar, to have their chance to meet him before it was too late. On the 5th day, Paul and I put on a brave face for Oscar as the doctors remove his ventilator. We were told we would be able to carry Oscar to a private room to say our goodbyes whilst he took his final breath.
We ran to the private room, terrified that he would pass too soon! We sat in a chair as a family telling him how loved he was whilst we waited for the dreaded moment he would leave us. Minutes passed- Oscar was still breathing and sleeping. More time passed and Oscar continued to breathe! Paul & I kept looking at each other. Another breath passed… We both knew what the other was thinking but dared not to say it, in case we were wrong.
As 1 hour passed our tears had stopped, our fears were subsiding and hope was growing- Oscar had done it! He was breathing on his own and we were mesmerised by each breath. I left the room to update our family. Sad tears turned to happy tears! That night Oscar, Paul and I all sat in that room, along with Oscars grandparents, listening to every breath and taking it in turns to have cuddles. The next morning it was settled- Oscar was here to stay! He was a fighter in control of his own destiny. He refused to play by the doctor’s rules, so the family and I put our game faces on and decided to fight with him.
On day 7, Oscar was transferred back to our local hospital. There he stayed for the next 8 weeks whilst preparations were made to bring him home. Paul and I were trained on how to care for his needs. We learnt to suction Oscars secretions from his mouth as he could not swallow and we learnt how to feed him via an N G tube which is passed into his tummy through his nose. Carers were recruited to sit with Oscar through the night as he was at risk of aspiration. Equipment was ordered, supplies delivered- the list goes on and on! On 16th of December 2013 Oscar came home. Christmas was just around the corner, and what a Christmas it would be! Oscar was home and surrounded by his family.
Fast forward 3 and a half years and Oscar is still defying the odds and going strong. His gorgeous looks and gentle soul touch the heart of everyone he meets. Oscar has a local celebrity following, has made a number of TV appearances and attends endless charity events to raise money for his continued therapies. Our lives have changed hugely. Paul still runs his own business to provide for us and I gave up my job to care for Oscar. He attends a special needs nursery with either myself or a carer a few times a week, and his therapy is never-ending. We tried and tested many therapies, with varying success to give Oscar every opportunity in life. Our aspirations for our child have adapted accordingly. We no longer care for big milestones such as crawling, walking, talking, driving or going to University. We just hope he is happy and finds his own way in this world. Oscar needs constant support, monitoring and care. He requires special needs equipment for sitting, sleeping, standing and feeding.
He knows he’s loved and he’s learning how to overcome his difficulties to communicate with us using symbols, noises, eye movements and limited facial expressions. Every day with Oscar is a blessing and we are better people for having a child with such bravery and courage to take each day in his stride. We are currently working on potty training, among other things, and will never give up on our baby. We’re blessed to have such an amazing support group of family and friends who have helped us along the way.
Whilst Oscar is currently small enough to sit in our laps for things like a haircut, this will not always be the case. Being immobile in this world can be very isolating. Not all shops, cinemas, offices, play centres etc. are accessible to wheelchair users and this makes some activities unobtainable for our son.
To know Oscar’s Uncle Ian is challenging these boundaries and making a special needs hair salon will give back some independence to both children and adults like Oscar. Everyone has the right to be pampered and feel special. Paul and I feel that this is truly amazing and heart-warming. We have met so many families with similar issues along our journey and it’s the simple things like this that give us the determination to keep pushing forward and challenge these boundaries.
By Oscar’s mum Caroline.
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