24th OCTOBER - LYDIA WILL BE TWO!
Our Journey so far...
Lydia is our miracle baby girl. She has had 15 neurosurgical operations and in that time has had chemical meningitis from a surgical procedure in UHW and sepsis. Multiple abdomen drains. Four cardiac arrests, pneumonia and over half her life in hospital.
On new years day 2016 we were given 24 hours to say our goodbyes and by God's amazing grace she has pulled through and has been home with us since March.
In May 2016 we were told by the neurosurgeons in UHW Cardiff there is no more the NHS can offer her and "any day" she could be taken from us to be in heaven.
We prayed and found a surgeon in Boston who believed he could cure our beautiful baby girl. This was SERIOUSLY EXPENSIVE. So we started our fund. The neurosurgeon in Boston was concerned that Lydia's medical care had been poor and that she had not received the proper treatment she deserved. He also stated that we had been given bad advice. We took this information to our team and pleaded for a second opinion. In the time it took to get the money together for Lydia to be seen in Boston, she had become exceptionally unwell and was airlifted to Alderhey Children's hospital in Liverpool for a second neurosurgical opinion. The second opinion in Liverpool confirmed we had been grossly misinformed in Cardiff and there were in fact many options for Lydia to live. However the second opinion had taken four months to come through, by the time Lydia was seen in Liverpool she had drastically deteriorated and in one operation in Alderhey Lydia suffered a cardiac arrest as the anaesthetist had put the breathing tube into her stomach and not her lungs. We were not told this at the time, we knew something was wrong but no one was willing to confess what had happened, in December 2016 we were called to a clinic appointment in Swansea. We were informed that because she was starved of oxygen for 20 minutes she now has cerebral palsy.
Our intention as a family is to get to Boston for a world class specialist to review Lydia and get as many therapies and treatments as possible whilst we are out there.
Please join us L.Y.D.I.A
Living Your Dreams IS Achievable!!
How we have coped