I am writing this letter to my daughter's paedatric neurosurgeon. I felt the need to write it down and share. Whether I actually send the letter to him I don't know yet.
Dear Mr S.
I called your office today to ask your secretary to give you a little reminder that you promised to call me last week. I know you are an incredibly busy man, but my daughter is eight years old and has been suffering for more than eight months and is very much in need of your care and attention. Also, I am a very stressed out mother who has barely slept for the last week.
Constantly on my mind is how my daughter's condition has become so bad. I really can't help thinking that if she had been treated properly and promptly in the beginning we would not now be facing surgery. For two weeks I brought her into the Accident and Emergency Department and was constantly told it was nothing to worry about and it would fix it self. It didn't and she was offered a CT scan of her neck. The scan showed a subluxation of the atlanto occipital joint and she was admitted to your ward.
For a week she was treated with muscle relaxants while we waited for a traction bed for her. The bed arrived but the decision was made not to go ahead with traction and to try physio therapy instead.
I was happy to go along with this. Of course, the less distress to my daughter the better and if it could be put right by physio therapy then I was happy to bring her to the hospital twice a week.
It soon became apparent, however, that the physio therapy was not working. Her nurse was really concerned but had to push for another CT scan. After the scan the physio therapy was stopped, we were not told why, but we were then left in limbo. For weeks I waited for a call to come and see you and find out what was going on, what the next step was going to be. I was told that you were busy, that there were no appointments in your clinic, that I had to wait.
I became impatient and called the Patient Liason team at the hospital who finally managed to get me a clinic appointment. First my girl had to have another CT scan. At the appointment we were told she was going to be admitted for a manipulation as the subluxation had become worse and it needing correcting. So my daughter was taken to theatre and the manipulation performed and a halo traction brace fitted.
She wore the halo for thirteen weeks and on removal we believed that she would now be fixed. This was not the case, her neck began to slip back the very same day. At her halo removal check it was obvious that something was wrong so I was told she would need another CT scan. After the scan we were left in limbo again, not knowing what was going to happen next. I called your secretary who then managed to fit me in for an appointment.
The scan showed that a piece of my daughter's bone had deteriorated and it was unlikely that it would hold her neck up without further intervention.
Then, well, we are still waiting to hear from you.
The questions going around in my mind are, how, when and why has her bone deteriorated? Was it in the beginning when her neck was so twisted the bones were grinding against each other? Did it happen while she was having physio therapy trying to make the bones go back into place? Maybe it happened during the manipulation? Why has it only just been detected, did it happen very recently? My daughter has had many scans and xrays (I have the dates and times of every one written down) why wasn't it noticed sooner?
More importantly, what are you going to do for her now, and how much longer will we be waiting.
A Distressed Mum of a Beautiful, Brave Little Girl who deserves to be treated better.
This post will be duplicated on my other blog Raisiebay.