Voodoo Shunt (Slight Revision)

On Wednesday 9th October 2013 at approx 08.39 I saved 3 children from almost certain death. As I was walking Lilly to school we heard a panic stricken mother running after an electric blue Vauxhall Minerva which was accelerating under its own steam backwards down a steep incline after her errant son had let the handbrake off. Without thought for my own safety I attacked the Minerva with my shoulder and fuelled on adrenaline I brought everything I had to offer to resist the inertia of the car. After practically burning the soles off my boots I beat the car into submission, she reached in and secured the handbrake. “Thank you” gushed the mother and I turned and utter the words I have wasted so many time on Jo in the past. “When you are parking on an incline love, ALWAYS leave the car in gear FFS!”

By any judgement this makes me a hero but there will be no parade, I am too modest for that. Speaking of heroes, ours are Mr Khalil & Mr Bukhari and all their surgical teams and anaesthetists at Manchester Childrens Hospital & St Mary’s. Without them we wouldn’t have our twins here today and in particular, Thomas.

Certificate

A year ago today, on Wednesday 17th October 2012, at only 12 days old Thomas had his first life saving operation to repair a ruptured bowel at St Mary’s hospital in Manchester. He would have 4 operation before he left St Mary’s, 3 on his bowel and one to insert a shunt to control his hydrocephalus. Without the intervention of these clever surgeons, Thomas would have faced almost certain death.

Today, exactly a year after that first operation, we were back for more surgery.

Having a shunt makes Thomas Bionic. Without the insertion of a valve and plastic pipe-work to move excessive spinal fluid from his skull to his abdomen he would die. Unfortunately when you are reliant on a human made component to keep you alive you are also prone to an occasional malfunction bringing you back into hospital for a “revision”. Thomas’s shunt was not operating at its optimum. Despite him being well in himself, the evidence from weekly measuring showed his skull size was accelerating away from the acknowledged centile. For too long we had waited for it to correct itself but the evidence was damning, his shunt had to be revised.

There is a big difference from being “IN” and “OUT” of hospital. When we were IN hospital, surgery scary as it was, was just part of the process of fixing the twins to get them home. Being born so dangerously premature, at 24+5 weeks, they were in for a minimum 15 weeks regardless of any setbacks. Of course the first time your child has surgery it’s frankly terrifying, but by the third or fourth time it has become routine. It becomes something that breaks up the monotony of an extended stay in hospital, in an odd way it gives you a focus, something to think about, something to kill the time, “A bit of excitement”. Towards the end of the twins stay in hospital we had become so medicalised, so used to procedures needing doing that if Josef Mengele had popped his head in and suggested that swapping the twins internal organs over would give them a better life outcome we would probably have signed the consent form.

But for nearly 6 months now we have been OUT of hospital which makes the prospect of surgery a complete pain in the arse. Having 4 children, we have serious logistics to implement. We both work and Lilly, our 5 year old, has a social diary bursting at the seems with engagements and parties. Me and James have the boat to incompetently race on Sundays and this weekend its Bradshaw fireworks. There are financial things to consider too. Every day off for both me and Jo is unpaid and being already nearly 6 months down on wages through the twins premature birth, things like paying £70 a day for the services of a childminder of which we are not seeing any benefit really hurts our wallets. Its all a trifle bloody inconvenient if I’m honest.

We set off at 6.45 this morning as Thomas had the first available surgical slot and unbelievably everything happened bang on schedule. The two teams of surgeons, neurosurgery & bowel, had no last minute emergences to attend to which would have scuppered Thomas’s slot. He went in, they took everything out, gave it a good rodding, replaced a valve then put him back together. Textbook. We can’t say for sure that this will resolve the matter as it seems the issues lie with absorption of fluid at the abdomen and unfortunately Thomas is battle scarred from his multiple bowel operations which seems to be the route cause of the issue. It is not unthinkable that Thomas may require further surgery to find a different absorption point for his spinal fluid, with the heart being a prime candidate but lets think positively? Hopefully this has done the trick.

Thomas

And there we have it, another operation for Thomas which has hopefully fixed his shunt. He is still blind, deaf in one ear, has probably cerebral palsy, definitely has hydrocephalus, a damaged palate from being on a ventilator for far too long and is still reliant on oxygen overnight. That aside he is happy in himself. He is our beautiful baby boy with a gorgeous smile, wonderful laugh and ever loving cuddles. Best of all he is Bionic! How many of you can say that?

(For anyone looking for Mia news, she is practically discharged, and despite her journey is a perfect, normal, noisy, wriggly beautiful baby girl)

MIA

Thanks again for all your love and support, best wishes X

One thought on “Voodoo Shunt (Slight Revision)”

  1. Not only is he Bionic but he is AMAZING they both are well you all are i wouldn’t of been able to do it you are all so strong.You’ll always be in our thoughts and prayers. Love Mare xx

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