Friday, 7 October 2011

We'll Miss it When it's Gone....

After a text book pregnancy, I went into labour at 1am on Thursday 12 February 1998. Our birth plan had been for labour to start at home and for me to transfer to hospital for the birth. Our midwife was called out and did an examination, at which point it was discovered that the baby's umbilical cord was lodged round her neck, so as a precaution I was taken straight in to the hospital. After an uncomfortable night on the ward, I was taken to the birthing room in the morning and my partner and I spent the day waiting for the labour to progress. Not much happened over the course of the day, so on the Friday morning  they decided to induce.


When at midnight I still wasn't in established labour, they decided that if no progress had been made by morning, an emergency C-section would be needed. 


And so, at lunchtime on Saturday 14 February, our daughter finally arrived, looking pink and beautiful. Actually, a little pinker than we were expecting, due to a sizeable birth mark which covered most of the left half of her face and skull. She was a good weight, though, and all the necessary checks were done to pronounce her fit and healthy. My exhausted partner, who'd stayed with me throughout and who only had my old pullover to wear (it had been unseasonably warm, and he'd come into the hospital wearing only a T shirt and jeans), went home to get some well-earned rest.


The next day, she appeared a little jaundiced, so we were moved to a side room with a light-box and she 'sun-bathed' to reduce the jaundice. Staff came and went, pronounced her beautiful and assured us that the birth mark would fade in time. On her second night on the planet, a junior doctor came to visit me late at night to say that he had been doing some research and thought it possible that the birth mark was indicative of a rare but serious neurological condition called Sturge Weber Syndrome. After the trauma of a 3 day labour, this was not what I wanted to hear (especially in a lonely hospital room, on my own, late at night). 


The next day, she underwent X rays, and we were visited by the Chief Consultant to explain the condition, which could present as anything from - well, very little to very severe developmental problems, epilepsy, glaucoma, hemiplaegia (weakness on one side of the body), learning difficulties, etc.  Diagnosis couldn't be confirmed fully without further investigation and we were assured that she would be monitored closely.


After a week of sun treatment, we took her home and started life as a family. She had a CAT scan at two months, and was seen quarterly by a consultant at the Eye Hospital to make sure that the glaucoma would be spotted if it arose. Developmentally, she was fine, hitting the milestones on target and doing pretty well. Of course, we jumped at the slightest twitch, in  case it was the epilepsy kicking in, but she was fine and we made arrangements for me to go back to work, and arranging for a place for her at our local children's (later SureStart) centre.


A week before she was due to start nursery at 6 months old, I visited my sister in Shropshire. On the way back in the baby seat, my daughter seemed distressed, but I put it down to her picking up on my stress levels navigating the M6 in rush hour.


The next morning she was clearly unwell; listless, unfocused. We called our GP, who told us to bring her in. As we arrived, he ushered us in past a queue of waiting patients, examined her and said that she appeared to be post-ictal and suggested we took her in to the hospital. She was admitted as an in-patient and during the course of the day had more seizures. It took us a week to get her stabilised on phenobarbitone and carbamazapene, but she made a good recovery and started nursery only a week behind schedule. She also sat up for the first time while in the hospital, so clearly the seizures where not affecting her development.


And so it went on for a couple of years. Her seizures, usually partial, came in clusters, usually towards the end of the week when she was tired or when she was unwell and running a temperature. At 3, while on holiday with my parents, she had a major seizure, and her medication was raised in line with her increased body weight.


Shortly afterwards, she embarked on a course of laser treatment to reduce the appearance of her birthmark (see my previous post 10th Anniversary for the background on that), and a year ago decided to discharge herself. The birthmark has not gone completely (and probably would never have done), but is considerably reduced. More importantly, she is confident enough to face the world with it on display.


A few weeks into her school career, it was noticed that she was failing to settle and that her  behaviour could be very erratic. By Year 1 she had a statement of special educational needs and 1:1 support in class. Although she did not appear to have learning difficulties, her learning was being severely impaired by her behaviour, and so the NHS Child Psychology Service was brought in, and we attended parenting courses to help us understand and manage her behaviour. In Year 3, after a particularly severe meltdown, we were referred to a new psychologist who decided to investigate whether, apart from the Sturge Weber diagnosis, there might not be something else going on. After an intensive round of sessions with our daughter and us, looking at every aspect of her life to date, we were given the diagnosis of Autistic Spectrum Disorder. 


I know you are supposed to be devastated when you get this diagnosis and mourn for the child you thought you had. We were just relieved that finally we had an explanation and - if you like - a label (Me, I don't mind labels if it gets us the help she needs). This enabled us to work with the medical and educational authorities to later manage her transition to a mainstream high school.


She had a good start to year 6 and then, on a routine visit to the Eye Hospital, they discovered that she had a choroidal haemangioma, leading to a detached retina. Not the normal, torn retina, but a bleed behind it which had been leaking fluid so that, in the words of the specialist, it was like wallpaper peeling of a damp wall. She was referred to another hospital, and an emergency operation to reattach the retina, with a silicone splint inserted to hold it in place, followed by a course of photodynamic therapy. This failed to reduce the tumour, so she was then referred to another hospital for radiotherapy. This appeared to be successful and on a subsequent visit, it was decided to remove the silicone splint. We had been told that it was likely that little, if any, sight would return, but my feeling was that with the eye still in place (instead of removing it - pretty traumatic for an 11 year old), it was at least possible that there might be some possible treatment in the future which might restore some sight. Unfortunately, the retina detached again and rubeosis developed so her eye is now effectively dead; we still have quarterly check ups to monitor it, in the hope that it can stay in place for as long as possible.


She still sees the psychology service on a regular basis - the problems of being a partially-sighted, autistic  teenager are many and varied - but fortunately, she has been seizure-free since 2001 and has recently been weaned off the medication, so far with no ill effects. She is currently undergoing orthodontic treatment to reduce the uneven appearance of her teeth (also an SWS manifestation). It's a struggle keeping her in mainstream school, but with the input of the medical professionals, we are getting there - just.


The point of this very long piece is to highlight how much interaction she has had with the National Health Service in her short life. She has had world-class treatment from many professionals - treatment that we, on modest public sector salaries, could never have afforded to pay for. I have said many times since she was born, "Thank goodness she wasn't born in America."


Which is why it both breaks my heart to see the NHS being sold off to the medi-vultures by Lansley and his pals, and scares me, too.


What will happen to her in later life, if her eye deteriorates? If her autism prevents her from meaningful (if any) employment and makes her behaviour more challenging as she ages? At the moment, her father and I can fight her corner, but what happens when we're no longer around? 


And make no mistake - if the Health Bill goes through, as it looks like it will - all this superlative care, free at the point of delivery, will go, and people like my daughter face a miserable future.


And that's not even starting in the issue of disability benefits and work.............


NHS Roll of Honour 1998-2011


St Mary's Hospital for Women and Children, Manchester - Neonatal and Neurological Depts
Manchester Royal Eye Hospital
Manchester Children's Hospital
Manchester Dental Hospital
Manchester Community Paediatric Service
West Point Medical Centre, Levenshulme, Manchester
West Point Dental Centre, Levenshulme, Manchester
Leeds General Infirmary, Dermatology Dept
Child/Adolescent Psychology Service, Winnicott Centre, Manchester
Royal Liverpool University Hospital, St Paul's Eye Centre
Clatterbridge Centre for Oncology, Wirrall


[I'm sure there are others I've forgotten about, too]

Update:

I wrote this some years ago. Sadly, the NHS has been decimated since then, just as we feared. My daughter's physical health is pretty stable these days, but the psychological support she got from CAMHS has, of course, ground to a halt now that she's an adult. So the next time she has extreme anxiety and lands in hospital after taking a potential overdose of prescription medication, there is likely to be no follow-up. 

My late parents spent their last few days in NHS care - superlative care. Lifelong Tories, they didn't live to see the absolute mess their party has made of what my mother described as "the best thing this country has ever done." I'm so glad they were spared that. As for the rest of us? The more people keep voting for Conservative governments, the quicker we will descend into the barbaric US-style system where one piece of bad luck can land you with bankrupting medical bills. If you value the NHS, you need to vote Labour (and yes, I know New Labour allowed the first fault-line of marketisation to creep in). For your sake and your loved ones. Bugger Brexit - this stuff's more important.

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