A parent told me about a fantastic place called CPotential and how they would be able to support me. I reached out and it was the best decision I have ever made.” Nia – Jayden’s mum
The last few years have been laden with additional challenges for families living with disabled children, and now they face yet another – the cost of living crisis!
Fewer than one in four parents and carers are able to work full time with more than half not able to work at all. (Family Fund survey of 4,264 families with disabled children)
Jayden’s mum Nia is feeling the strain and tells us why…
Now aged one, Jayden has been diagnosed with bilateral cerebral palsy with spasticity and suffers from ongoing seizures because of his brain injury. Due to his disability and ongoing needs, I have been unable to return to work following my maternity leave and the cost of living increase is a huge worry!
Unfortunately, this is the case for many families raising children with disabilities.
I never could have imagined that anything could possibly go wrong
Jayden was born full term by forceps due to increased heart rate following induction of labour. I had a wonderful uncomplicated pregnancy and never could have imagined that anything could possibly go wrong right at the very end. The finish line was in sight, and Francis and I were so excited to finally hold our baby we had so desperately longed for.
However, when Jayden was delivered, he was blue, floppy and in very poor condition. He was immediately whisked away for resuscitation and the whole room erupted into chaos.
Jayden was intubated and taken to the neonatal intensive care unit with Francis, leaving me in utter disbelief at what had just happened. When Francis returned, he showed me a picture of Jayden, which was the first time I got to see my son.
He had suffered a lack of oxygen to the brain
Jayden had suffered severe hypoxic-ischaemic encephalopathy (HIE) and despite receiving cooling treatment at another hospital, sadly his MRI showed severe injury in nearly all structures of the brain.
We were told that it was unlikely he would survive without intensive care and that in the unlikely event that he continued to breathe on his own; he would be severely impaired, unable to suck, swallow, or even smile – needing continuous care.
After extensive discussions and a very difficult decision, Jayden’s ventilator was removed, and he was placed in palliative care.
Jayden, however, had other plans and continued to breathe independently – eventually able to suck and swallow milk using a bottle.
29 days later, he was discharged in time for Christmas. We were so happy but also terrified.