I have decided to keep everyone up to date with bits of info on Violet… I didn’t think FoD would be the right place for it, but the reality is that she is part of our lives just as much as Ava and Seren are…
A brief history – for those of you joining us a bit late in the game… My name is Helen and I am 33 years old. I have been married to Matt (36) for almost 6 years. We have 3 daughters, Ava (aged 4.5yrs), Seren (aged 2yrs4mths, who just happens to have Down’s syndrome) and Violet (aged 6 months).
After Violet was born, I noticed a dimple about an inch above the top of her bum crack. Fast forward a while, she had an ultrasound which diagnosed spina bifida (read this blog).
Fast forward a bit more and she had an MRI to see the extent of the spina bifida (read this blog)
Finally, she was diagnosed with a type of spinal occult dysraphism which means that she has a Dermal Sinus Tract (DST) and tethered cord syndrome. The two things mean she will need an operation (planned for January 2013) to remove the tract and untether her spine. Because of the location of the tract and tethering, there is more than likely going to be a knock on effect with her bowels and bladder. Depending on what I read, this seems to almost be a certainty, and her consultant did repeatedly warn that this was a possible outcome of the surgery. To check that her bladder and bowels aren’t affected by her condition anyway (ie before the operation takes place), Violet will have to be poked and prodded by the urology department over the next few weeks. This is to let us know what state her bladder and bowels are in prior to the operation so that any “damage” can either be attributed to the procedure or be put down to it being a congenital problem (ie one she was born with).
****If you are reading this blog because you have googled dermal sinus tract, tethered cord, dysraphism, spina bifida occulta, syrinx, lipomyelomeningocele, then please feel free to get in touch with me HERE. There is very little chat /contact support around about these conditions as together they are quite rare – I will be happy to speak with you!!****
Along with the two above things, she also has a lump. This is called a lipo / syrinx. This diagnosis is causing some confusion for me at the minute. As far as I understand this is inoperable but could grow, causing Violet to lose neurological function.
Although I completely trust the diagnosis that I have been given, I thought it was only right that I get a second opinion. We have rather a lot at stake here and I would like to try and ensure the best possible outcome for my little girl who (one way or another) has got a few hard months (probably years) ahead of her.
I managed to find a surgeon in Great Ormond Street who specialises in this type of dysraphism and he agreed to look over Violet’s scans to see if he agreed with the diagnosis and plan of action. I was expecting a letter in response as he is (understandably) a very busy man, with a 6 month waiting list to be seen in person.
Imagine my surprise when only 2 days after receiving all the information he needed to formulate a second opinion, I receive an email to say that he would like to see Violet next week. While I am so very grateful that he is squeezing her in, I am also shocked and quite sad about it as I can only take it to mean that he has a bit more to say on her diagnosis than we had anticipated. I will update on what he says next week – in the mean time, please keep baby Violet in your prayers / thoughts / whatever floats your boat.
Thank you to everyone who is supporting us on this little journey – we are grateful as ever x