Harriet had been referred to see a back surgeon at the Queens Medical Centre in Nottingham at the end of April by one of the Genetics team at Nottingham City Hospital and we were quite anxious to see whether the surgeon could help Harriet.
We arrived at the QMC at 10.00am this morning and were sent straight to X-Ray with Harriet, she was still very tired as she does not normally wake up until late morning and was a model patient when in X-Ray. The lady was happy with the two images she took and sent us back to see the consultant.
Once back in the waiting room we had to wait a further 30 minutes until Harriet was seen by the consultant, he initially asked a lot of back ground questions about Harriet`s condition and the types of things Harriet could or could not do .
The consultant then examined Harriet to see how bad the curve in her spine was and had to perform a number of different tests to see whether her back would stretch out or move.
We got Harriet dressed and then moved into the consultants office to look at the X-Rays that were taken this morning. The consultant explained to us that Harriet has a severe curve in her spine that was not only causing extreme problems with her breathing but was actually crushing one of her lungs and this condition would only get worse if left untreated.
Our initial thoughts were that Harriet would probably have a jacket made that would stop her back from becoming any worse and maybe we could do lots of physiotherapy with Harriet to try and correct the problem, but this was soon dashed and reality hit when the consultant told us that Harriet would need surgery .
We both felt devastated as this was something we really did not want for our little Harriet to go through, as she has already been through so much, in such a short space of time.
The consultant explained things to us very well and gave an analogy of Harriet based on a small tree that had a bend in it, the trees bend would over time become worse and have a stronger curve, he also said Harriet was caught between a Rock and a Hard place due to all her problems and really did need the surgery.
We asked a few more questions to try and find out what was involved in the back surgery and hopefully put our minds to rest, but this just seem to make us both more anxious .
The consultant explained to us that with any surgery there were risks involved, but Harriet had a lot of problems and these risks were significantly amplified.
We were told that in order to try and correct Harriet`s spine and chest that she would need to undergo an all day operation or from 9.am in the morning until 4pm in the afternoon.
The strain of such an operation on any normal human being would be massive, but with all Harriet`s problems this just felt so wrong, but we both knew that without this operation that she would simply die.
In order for the operation to get the green light, Harriet must see a Heart specialist and an anesthetist specialist to make sure her body can cope with this amount of trauma.
Harriet is also having an MRI scan on her brain in mid June to see whether she has made any improvement or whether her condition has become worse, the consultant back surgeon has asked that Harriet also has an MRI of her spine at the same time to see whether there are any hidden problems.
We wanted to know when it would be possible for the surgeon to perform this operation if everything went well with all the other tests and he told us that it would have to be performed in the summer as there were simply to many bugs within hospitals during the winter months therefore this procedure was just not performed during the winter months for these reasons.
Leaving the hospital with Harriet we had a little hope and a lot of anxiety as to what the future may hold for our little Harriet and new that this was our only hope to try and save her.
Mum and Dad