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Some of our Spina Bifida patients tells us about their life and about using LoFric Catheters, please read their stories below. There are more testimonials and user comments in the Testimonials section of the LoFric Homepage.
If you would like to help others by telling us about your own experiences of your condition and how ISC and LoFric has affected you, please email select@astratech.com
With your permission, your story may be published in our Select magazine as well as appearing in this section of our website, if you prefer, your identity will remain confidential.
Kathryn’s Story
Kathryn was an IVF baby who was born with Spina Bifida. She is now seven and generally has coped well with her disability.
We managed Kathryn’s ISC ourselves and she used to call her LoFric catheter her ‘slippy eel’ as we found it so slippery to handle when wet! As Kathryn’s care progressed, it became obvious she had no control over her bowels either. The consultant at the hospital suggested using anal plugs with emptying via manual evacuation. This meant Kathryn could wear normal pants during the day. It also meant that when she started school it was not as traumatic as I had first thought.
Two teaching assistants (TAs) had volunteered to do her catheters as they were concerned that she may have to go to a special needs school because of needing catheters three hourly. I went into the school and rained them up over a two week period. As the weeks progressed and the TA’s confidence grew, I felt I wasn’t needed as much and was just ‘on-call’ at home – something which I still am today.
We continued with Kathryn’s care and it didn’t appear to affect our lifestyle too much and we had got used to living our lives by a timer. We even took Kathryn to Florida for three weeks and that holiday was planned with military precision! We had a doctor’s note to request a pass at Disney as some of the queues were in excess of 90 minutes waiting time. As Kathryn needs ISC every three hours we would be going on a ride, finding toilets and then queuing for another rise. The Fast Pass enabled us to go through the disabled entrance and made a big difference.
Some people obviously thought there was nothing wrong with Kathryn as I have found that if a child can walk okay and only has a hidden disability, people don’t think you should be eligible for disabled privileges, like having a Radar toilet key. Have they ever tried to use a catheter on a child in a small ladies toilet?!
Some time had passed and we became aware through Astra Tech about catheters with drainage bags – LoFric Hydro-Kit II – these have changed our life dramatically. I can even pop one in my handbag when we go out instead of carrying around the massive changing bag.
In October, we felt Kathryn was ready to learn how to do her own ISC. She increasingly wanted more freedom like days out with her Grandpa and up until now, I either had to tag along or she could go out only for a few hours. It also meant she could go to friends’ houses straight from school, jut like her classmates. With a little help from the hospital specialist urology nurse, we trained Kathryn to do ISC and she now does them at school as well.
I can’t believe how grown up she is about all this, the freedom she has been given by using Astra Tech products is amazing and most people don’t know she even has a problem. She went to a party the other day and a parent was supervising the toilet run and asked Kathryn along with all the other children did she want to go to the toilet. She replied ‘no thank you, I go to the toilet in a special way because I am a special girl’! she certainly is.
I hope this story will give encouragement to other parents who have a child with spina bifida, to prove that you can live a relatively normal life, despite what life throws at you.
Matthew's Story
Matthew, aged 4 has a mild form of Spina Bifida; his bladder does not work properly which causes reflux to his kidneys. He also has slight muscle wastage in his legs and has suffered kidney failure. His parents write:
Our main concern was protecting Matthew’s kidneys and we were told catheterisation would help. At first, we wondered how Matthew would adapt to the procedure and as parents our main concern was would we be able to do it. His father was very worried as he was relating the procedure to himself and felt it would be awful.
Our local Continence Advisor introduced ISC to us using a LoFric catheter. Matthew adapted to ISC immediately and our only concern now is he leaves going to the toilet to the very last minute. He gets bored whilst the procedure is taking place and pulls things off shelves or squeezes our noses and pats our heads.
As he is only four it will be a while before he can catheterise himself. We find the procedure easy at home because everything is to hand, doing it away from home is a little more difficult. We prepare a bag with all the things we will need, our main concern is trying to be discreet which will get more difficult as Matthew gets older.
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