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Victory for Katie

KatieMy daughter, Katie, has Tuberous Sclerosis, which is a genetic condition and it manifests in various organs, causing growths.  To date, Katie has had growths in the heart, kidneys and brain.  She also has the facial rash, known as facial angiofibroma, which spreads across the cheeks in a ‘butterfly’ shape. 

Katie was born in Barcelona, Spain, two months prematurely and was born through caesarean section because she was diagnosed, pre-birth, with ascitis.  She weighed 2.4 kg and 600 grams of that weight was the ascitic fluid that she had been retaining in her tummy due to a heart growth, called a rhabdomyoma.  She was in an incubator in the intensive care unit for the first month.  Doctors believed she was going to die and she was baptised 3 days after birth.  She developed pneumonia when she was 10 days old and recovered.

We came to England when Katie was 5 months old.  She was attached to a monitor most of the time, because she had many episodes of tachycardia and she needed urgent medical treatment if they continued for more than 4 hours. We had two seats on the plane, once for us and the other for the machine!  We walked through the airport with a trolley carrying our suitcase and Katie in her pram placed on top, secured on to the trolley with rope.

When Katie was 6 months old she had her first seizure, in a Tesco’s trolley.

When she was 10 months she caught bronchiolitis while we were visiting our family for Xmas in Spain and was hospitalised for 34 days, in intensive care, and intubated for 21 days.  Katie pulled through, although 2 babies on the unit passed away due to the illness.  There was an outbreak at the time.

In 2003 Katie suffered severe gastritis which was not correctly diagnosed.  It was assumed that her doubling over and terrible discomfort was due to a change in  seizure activity.

Katie had brain surgery in 2004 to remove two of the largest growths in her brain.  This was a successful operation, but Katie woke up very quickly after the surgery and, since no one was expecting this, she tore off her bandage and got off the bed.

Katie is wary and weary of hospitals.  You can try, until you are blue in the face, to explain, in every way, why it is necessary to go.  All Katie knows is that things happen to her, people in white or green pinnies try to make her accept things she doesn’t like and look at her without seeing her.   We went through endless appointments which seemed to yield nothing.  Going through the same questions again and again every time we saw a new registrar. 

Although we know these appointments are necessary, they still take their toll on our emotions and well-being. Katie is unable to communicate vebally and when she feels fed-up and doesn’t want to sit around in a hospital environment she can display very challenging behaviour.  This behaviour always seemed to come as a shock whenever we had an appointment for any type of procedure and often resulted in the procedure not being carried out.

In 2011 we achieved two procedures under one GA; an ultrasound scan of her kidneys and an MRI of her brain.  This was successful because we were able to plan ahead.  We carefully coordinated everything.  Katie’s school gave us 3 carers for the day, there was nobody in the sensory room at GOSH, so it was  just for her. We played all the games Katie chose and every time she let us know she wanted to go home we diverted her attention.  Her slot was brought forward, so she didn’t have to wait for too long.  She was given Midazolam to calm her before going down to Xray and she walked down with a lovely smile on her face.   Katie got a bit anxious when she saw the trolley bed so the anaesthetist suggested we wheel the trolley out and place a large sheet on the floor.  That worked very well.  Katie was distracted by 3 carers and mum, all sitting on the floor, while the anaesthetia team did their thing.  The gas got her to close her eyes and relax her muscles and then the anaesthesia was injected. 

1 and a half hours later all was done.  Katie woke up feeling a bit groggy but fine and as soon as we got home she had a bath, lay on the sofa, put the quilt over her and watched her favourite dvd.

Although all this may seem easy, it was actually a military operation, which required input from the CBF and other specialists on the phone and fighting with us.   It was the first time I did not feel like I was the only one fighting my daughter’s corner.  I had 3 wonderful carers from Katie’s school and the more than wonderful CBF pulling every string, all to ensure Katie got the treatment she needed without causing Katie distress.  What a victory!

Kate Farmer, Katie's Mum

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