My Story by Paula

My name is Paula, mother of two girls or should I say young ladies, as they are now in their 20's. Both pregnancies were pretty similar that was until my 30week scan with Kirsten, the youngest. It was at this scan they discovered there was a chance I might deliver placenta first. It was decided that I would be scanned again at 35 weeks and subsequently every week after, my bladder didn’t know what had hit it. Kirsten delivered normally at 39 weeks weighing 6lbs 1oz with no apparent problems.

Life was little harder with two children but we were lucky to have grannies to help out when needed. As Kirsten reached 6 weeks old and was heading for her first check-up, myself, Brian and my mum began to voice concerns about her left eye showing signs of a Squint. When I raised this at the check-up I was given the brush off and told if still concerned when she was due for her 8week vaccination mention it again. So that’s what I did to be given the brush off again.

Very unhappy I went straight to the Baby Club and spoke to a Health Visitor who actually listened. She made another doctor’s appointment, so back we went again to be patronised by the doctor as she told my mum and I that she couldn’t see anything ...”but I suppose a mother knows best.” I felt she was referring to us to a Specialist under duress but she did, so waited again. At 10 weeks we were told Kirsten had Bilateral Cataracts. My mum had gone to the appointment with me and neither of us had ever heard of children having Cataracts. Luckily the Registrar Doctor whom we had seen was moving to work with the Paediatric Eye Consultant so Kirsten’s file went too. We had so many questions and in 1993 the internet was alien to me so to the library it was not that we found out much before we went to meet our new consultant.

At 11 weeks old Brian and I took our new baby to the Royal to meet the Registrar  I had met the week before and the Consultant to be told bluntly that Kirsten’s lenses would be removed and Contact Lenses fitted later. As we didn’t have a clue what any of this meant we asked “How long would she need contact lenses for?” To be told for life. Our baby daughter now had a new title – Visually Impaired.

At 12 weeks we were back at the Royal having fasted Kirsten for several hours ready for theatre. As the scheduled time drew near we paced the floor trying to calm ourselves and a crying hungry baby. An hour before the operation we were told it couldn’t go ahead as a Consultant Anaesthetist wasn’t available. We were told to take Kirsten home and await a phone call when to return.

The next few days were a blur then on Friday the call to bring Kirsten into hospital on the Sunday evening to go to theatre first thing on the Monday morning. Monday morning arrived and Kirsten was taken by a young auxiliary nurse, as neither Brian nor I could face taking her up. We waited on our baby coming back not knowing what to expect. We got a bit of a shock when she came back with drip still attached and two large plastic eye patches stuck over her eyes. The drip was removed immediately but the patches not until the next day.

Wednesday came and home we went with drops and an appointment for the next Monday. Eye drop nightmare but we managed only to be shot down at the check-up appointment as the consultant accused me of not administrating the drops properly and had probably caused more eye damage. What had I done? We were taken straight to the ward and Kirsten went back to theatre next day. Did the consultant come back and apologise, NO, it wasn’t my fault Kirsten had developed Glaucoma but another eye condition that hadn’t been detected. We spent another few sleepless nights in hospital before Kirsten was taken back to theatre again to try and separate her pupils and irises. This didn’t work so they drilled a small hole in each iris to relieve the pressure and let the fluid circulate.

Kirsten was fitted two weeks later with contact lenses. She had several eye infections over the next 2 years when we eventually gave up lenses and opted for single vision glasses. When Kirsten was starting school she was prescribed Bifocals. She still wears bifocals although she has tried contact lenses a few times, but she’s happy in her glasses and has coped well in mainstream schooling with just a few hiccups. Kirsten has successfully passed her GCSE's and A Levels and after spending a year volunteeing in Cananda she returned to England to go to university. She now works as a Church Administrator in England. Kirsten is a Guide Dog user now, which has given her independance to achieve her goals!

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