This is Edward Richard Walter Hewitt. He was born 14th August 2015 after an uneventful pregnancy. I was working as a recruitment manager at the time and the plan was that I return to work after initial maternity leave. Unfortunately this was not to be. When Edward (Teddy as we call him) was delivered he didn’t cry and alarm bells started to ring! He didn’t open his eyes and wouldn’t feed. Quickly he was transferred to the SCBU (Special Care Baby Unit). On his first night they identified that there was epileptic activity and we prepared to be transferred again, but this time to GOSH (Great Ormond Street Children’s Hospital). Once there the Doctors explained that Teddy had a neurological condition which would affect his life forever.
Teddy’s care was 24/7. His medication routine was intense and I had to learn new skills in which to look after our boy. As I had to give up my role, we made financial changes as a family and we applied for disability living allowance and carer’s allowance. The drop in income was substantial but we made it work, just!
Our little fighter was in and out of hospitals throughout his life. We spent time in most of London’s specialist children’s intensive care units. In February 2018 Teddy and I were transferred to Royal London hospital PICU (Paediatric Intensive Care Unit) due to breathing difficulties. He improved enough to be sent back to our home hospital but overnight it was clear we were heading back to London to GOSH PICU. Here they told us the news that we were never hoping to hear. We were transferred to Little Havens where life support was withdrawn. He passed peacefully in the early hours that following morning, in my arms and surrounded by his family.
The hospice gave us so much support, helping us arrange everything and keeping me level headed enough to do what was needed. Without them I know this would never have been possible. I notified the disability living allowance team and the carers allowance team to be told that this money would stop immediately. At a time when I should be allowed to grieve I had to return to work as soon as possible.
If I had been working at the time, any employer that stopped my salary instantly would be classed as heartless. I am the lucky one. I was strong enough to continue with work and make ends meet. I am the exception. Many families, understandably, are unable to return so quickly creating financial distress. This is why the Teddy Hewitt Foundation was created.
The Teddy Hewitt Foundation was set up to assist families in need of financial and physical support following the passing of a child, when one parent is financially reliant on the disability living allowance and carers allowance in the 3 months following the child’s death. We are initially limited to families living in Essex but if things pick up we hope to increase geographic cover.
The charity was set up due to one family’s experience; Teddy’s family. Teddy’s mummy worked within recruitment as a manager and intended to return to this after her maternity leave. When Teddy was born it became apparent that this would not be possible. Medical-lead childcare is beyond expensive so the decision was made as a family to reduce outgoings and leave work to care for Teddy full time. When Teddy passed away the income that the family relied upon was immediately taken away.
Nicola, Teddy’s mummy, returned to work after just 2 weeks. This just isn’t possible for some. There are families out there that end up in financial hardship due to the pressures on them during this incredibly difficult time. Often heartache is further compounded by these financial pressures and in the worst cases with some families losing their homes. We aim to help these families return to the workplace in a reasonable amount of time with the assistance they need.
63 Lundy Close