So today was the day… We headed up to Great Ormond Street Hospital to get out 2nd opinion.
We prepared ourselves for the worst (having learnt from our previous mistake!) but we went up with a spring in our step and enjoyed some precious one-on-one time with our littlest girl.
Violet got her first experience of the London underground and wasn’t too impressed
We found where we were going and then hopped off for a bite to eat. Violet couldn’t stop staring at her daddy – we have ANOTHER daddy’s girl on our hands, so my hopes of having a mummy’s girl are disappearing fast! Our girls adore their daddy and Matt is a very well loved man… some might think that he is outnumbered, but honestly, to Matt he is the luckiest man alive to have 4 females doting on him!!
So after lunch we saw the consultant and he mostly agreed with everything that we have already been told – the main difference is in the diagnosis of the “lump”. As I have said previously, this has caused some confusion as it has been called all sorts up to now – including a syrinx / cyst and lipo / lipomyelomeningocele. The good (and somewhat surprising) news is that he thinks that it is none of those things… he thinks that the lump is just a part of Violet’s anatomy and that it will disappear as she grows and her spine fills out. I was delighted with this news, but Matt remains cautious. While we prefer the diagnosis that we have received today, it does not mean that it is the right one – one of them has to be wrong, it might not be the one we want it to be. Regardless of that though, for now, I plan on believing the good news and will deal with any variation on this as and when it *might* arise in the future.
The second big difference is that we have been given some statistics based on the surgery that the GOSH consultant has performed – he specialises in Violet’s kind of dysraphism, so he has a lot of experience under his belt. I am delighted with with what he said… The risk to Violet’s bowel and bladder from the surgery is 1%. The risk of “other” complications is also 1% – this includes spinal fluid leaking after the operation. The risk of infection to the wound and having to go back in to theatre is 2%-3%. Now those (to me) sound like pretty good odds.
The final difference is that he would like to perform the operation asap. This means that we now have to be signed off from our local hospital to be passed over to GOSH. When that has been authorised, Violet will go on the list with a view to having to operation before Christmas. She will also go on the cancellation list, meaning we could get a call any day to say that we have to get up there asap. Assuming there is no hold up in being passed over to GOSH, the next few weeks will see my heart jumping in to my mouth every time the phone rings…
Violet has had a lovely day and has no idea what all the fuss is about!