Parent story: Hannah was born with congenital cataracts

Angie Downing is mum to Hannah, who was born with congenital cataracts. For World Sight Day, Angie tells her story of being a parent through Hannah's diagnosis and treatment.

Hannah was born on 24 July 1994. Louise, age two, was delighted to have a sister to play with. The day after Hannah was born, the house officer thought she spotted something in Hannah’s eyes, as she wasn’t getting the normal reflex response during routine checks. The consultant ophthalmologist was called and she agreed that there was something wrong.  We were sent to see a specialist at Great Ormond Street Hospital, where we were told that Hannah had developed congenital cataracts and needed an operation to remove them. He said we were lucky that the house officer had spotted them, as they were only small white dots and not yet fully formed cataracts.

Hannah had one cataract removed aged six days and the other aged eight days. This was a frightening time for her Dad and me, and we didn’t know what the future would hold. The operation was a success; although the pupil in her right eye had 'stuck' and wouldn’t react to light properly, we were reassured she would still have sight in that eye.

Hannah was fitted with contact lenses and we were taught how to put them in and take them out, as well as how to keep them clean; not something we had expected to do for our newborn daughter. My husband returned to work and I started the 500 mile round trip on the train every week for her appointments.  When Hannah was 14 weeks old, I was having difficulty with her left contact lens and at her appointment she was then diagnosed with glaucoma. Eye drops began, day and night, as well as a referral to Moorfields Eye Hospital for Sir Peng Tee Khaw to take over her care. Little did we know at that time how much a part of our lives he would become – and Sister Ero and her staff on the children’s ward. They always went the extra mile for us and welcomed Louise when I had to take her with me for Hannah’s operations. Their care and attention was second to none.

At first the drops kept the eye pressure at a reasonable level, but soon she needed operations to reduce the pressure, all proving successful for a time. Hannah and I got used to the routine and Hannah would draw, read or we would play games to pass the time on our lengthy train journeys, anything up to three times per week. Hannah once drew a picture on the way to Moorfields of Professor Khaw (or Professor Smiley as she called him) with a big smile on his face and the sunshine behind him – he absolutely loved it. Although we did get used to the journey it was exhausting for us both. Family and friends helped Paul with the school runs and looking after Louise, allowing him to return to work. The local blind society also helped in any way they could.

By the age of four Hannah had slowly lost the sight in her left eye and she had to have a Molteno tube fitted to help with drainage. Hannah was one of the first children in this country to have it. This procedure allowed Hannah and I to spend more time at home, eventually being allowed to attend our local hospital for pressure checks in between appointments at Moorfields.  Hannah joined the local gymnastics club with her sister and with the aid of prescription goggles was allowed to take swimming lessons. At 13 she had a contact lens for her right eye which meant she could have normal prescription reading glasses.

Despite all of this, and losing her precious Dad at the age of four, Hannah has developed into a beautiful, funny, confident and very talented 23 year old who loves life and travelling. Hannah’s passion is still art, in fact so much so that she is at present studying Fine Art in Melbourne, Australia. She has never let her limited vision stop her doing anything she sets her mind to. Her sister Louise and I are so proud of everything she does.