It had only been a few weeks since we had seen the consultant back surgeon Mr. Grevitt , but today was the day that we would finally meet Harriet`s team at the Queens Medical Centre to establish what was best for Harriet .
We arrived at the QMC this morning with Harriet and started to head towards the conference room, Lesley started to get quite upset and just could not go into the room as she could not take any more bad news and therefore my mum came with me .
At the meeting was consulatant Paediatric Neurologist Dr. whitehouse, Professor Vyas, Consultant Paediatric Respiratory Physician, Mr Grevitt, Consultant Paediatric Spinal Surgeon, Dr Suzanne Wake, Consultant Paediatric Spinal Anathestist and Miss Ann Mariot, Scoliosis Nurse Specialist.
The meeting started very formally , all the consultants and doctors reintroduced themselves and then Mr Grevitt took charge of the meeting . I was asked to start the meeting by explaining what it was that I thought was wrong with Harriet .
I felt extremely anxious and overwhelmed by the question, but tried to answer this as best I could, I said “Harriet was suffering from some form of white matter disease that was slowly causing her brain to short out and that her overall development was controlled by her brain .
Mr Grevitt then explained to me that he had informed the team that I was not happy at our last meeting and that I wanted to know why Harriet`s operation had be postponed.
Each member of the team had looked at Harriet`s file before the meeting and then one by one they gave a full account as to what the risks would be if Harriet was to go through with such a major operation.
After each person had spoken I then got my chance to ask questions to each of the relevant consultants or doctors and was able to build up a clear picture as to what would happen to Harriet if we did nothing.
It quickly became very obvious to me that Harriet`s scoliosis was getting a lot worse and without surgery she may die within a very short space of time . Professor Vyas explained that Harriet`s lungs had very little space to grow and that if her lungs continued in this way then an operation later next year may not be possible and her lifespan would be significantly shortened.
I explained to Professor Vyas and the team that I was not prepared to watch my daughter Harriet die and that as much as I did not want to put her through anymore pain, that an operation to correct her spine and back was the only way forward .
I felt very emotional and just wanted to cry but the extreme amount anxiety adrenalin in my body stopped me as I waited for the response from Mr Grevit and the rest of his team.
Mr Grevitt said that he was prepared to do the operation given Harriet`s current situation and would now look to get Harriet in for surgery before October this year, he reiterated that there were risks involved during and after the operation as did the rest of his team, but knew this is what I wanted for Harriet .
The meeting ended and I was told that they would all meet again next week to find the earliest date and the best way to operate on Harriet .
I shook everyone hand and walked out of the meeting with Dr Whitehouse .
Dr Whitehouse asked us if we would go with him to ward E-39, as he wanted to take blood samples from Harriet, Lesley and myself , which would then be sent to Professor Adeline Vanderver in Washington DC.
We had the blood samples taken and were told that these samples would be sent to Washington today and that all Harriet`s medical files, including MRI scans, would also follow.
As I walked out of ward E-39 onto the corridor with Lesley I felt so drained and just started to cry, Harriet was getting worse and there was nothing I could do but wait.