Finding out your five-week old baby is partially sighted is horrible, but with the treatment and care she’s had at GOSH, I have no concerns that Maggie will be whatever she wants to be in life. We are massively grateful to GOSH. I can’t thank them enough.” - Maggie’s dad Gavin
Diagnosing Maggie's cloudy vision
Maggie’s dad Gavin shares his daughter’s story: “We knew something wasn’t right with Maggie’s sight almost from birth. The nurses and health visitors tried to do the red reflex test on her, which they do for all new babies. Her left eye responded well, but they struggled to test her right eye. It was always left for the next check-up, but four weeks later Eloise noticed that Maggie’s right eye was cloudy, which was worrying.
"We did what anyone else would do – immediately called 111 and went online to try in find out what the cloudiness meant. We got a call back from a doctor who told us to book a GP appointment for the next week and not to worry. With a little insisting, I was able to get Maggie an appointment at our local hospital the next day.
“By chance, she saw a paediatric optometrist. He had a looked and confirmed that unfortunately, it was the worst-case scenario. Maggie had congenital cataracts; she had no vision in her right eye. When a baby is in the womb, blood vessels attached to eyes to help them develop, and then they retract. For Maggie, they stayed attached causing the cataracts.
“When you have your first baby, you want everything to be perfect. To learn that your five-week old baby is partially sighted, that she’d ever be able to see out of one eye for the rest of her life, is horrible.”
Journey to GOSH
“The local pediatric optometrist referred us to GOSH. Within a week, we met with consultant ophthalmic surgeon Mr. Moore. He told us that as well as cataracts, Maggie also had glaucoma, which affects the pressure in her eyes. If it gets too high, it can damage her optic nerve. It was all very overwhelming and we were very nervous, but Mr. Moore was brilliant.
“In fact, the whole team was fantastic right from the start. They were always honest with us, which we appreciated. We knew that even with surgery, the vision in Maggie’s right eye was never going to be good. She’d always need a strong contact lens, eyes drops and patching to strengthen her weak eye. But by treating it early, Maggie wouldn’t be left blind if anything happened to her good eye.
“Maggie had her first eye surgery at just six weeks old. In attempts to save as much sight as we could, she had a lensectomy to remove the lens of her eye. She was definitely the tiniest patient operated on that day! She then had further surgery at six months old when the lens started to grow back. Her third surgery relieved some of the pressure in her eye caused by the glaucoma.”
“We were also supported by the play team. I remember Maggie having a whale of a time on the ward after her third surgery. It was around Halloween and she got involved in helping decorate the ward. The play team kept her entertained and distracted by doing lots of colouring and cutting out bats and other decorations.”
“As soon as Maggie healed from her surgery, we went straight into contact lenses and more eye patches. She had her first contact lens at 12 weeks old, which we didn’t even know was possible for such a young child. We put it in in the morning and took it out at night, which is incredibly difficult with a baby. We spent a lot of heartbreaking hours doing that.
“It’s also very difficult to put an eye patch on a baby. She didn’t like it and would try to take it off, and even though we knew the patch on would force Maggie to use her weaker eye, it was heartbreaking to have to cover the eye she could actually see out of for 10 hours a day.
“Almost seven years later, we continue to do everything we can to strengthen and preserve Maggie’s sight. She still has her contact lens, eyes drops and patch. Though, the older Maggie gets, the more she doesn’t like wearing her patch. We are, however, now pros at getting her contacts in and out. Maggie is almost at the stage where she can do it herself!”
A confident and creative child
“Looking at everything that Maggie has been through, she’s a real trooper. She’s dealt with everything in her stride. She is a very confident and outgoing and loves being creative, singing and doing art and ballet. She takes part in a musical theatre and dance group at school, and she’s recently got into horse riding. Maggie is a wonderful, friendly child that enjoys meeting new people.
“There’s also a lot of good that’s come out of what she’s been through. I believe she’s stronger for it. It’s given her challenges that she wouldn’t have had to deal with without the loss of sight. And having to interact with so many specialists at GOSH has made her more confident and caring. I have no concerns that she’ll be whatever she wants to be in life. Unless, maybe she wants to be a fighter pilot, but knowing Maggie, she’ll find a way to overcome that too!”
Visiting GOSH and the new Sight and Sound Centre
“We come back to GOSH every two to three months to monitor the pressure in Maggie's eyes, to check the condition of her optic nerves, and for her contact lens. Fortunately, the pressure in her eyes has been stable recently, but we still don’t know how this will affect Maggie.
“Every time we visit GOSH, it’s a long day for us. It takes us three hours to get to the hospital from our home in Dorset and we don’t often know how long we’ll be there. When we arrive, Maggie is already tired from travelling and waiting around in the Rhino outpatients corridor, makes it an exhausting experience.
“Having the new Sight and Sound Centre will make this experience so much easier. With it being a dedicated facility, hopefully our appointments will be more seamless. And just the thought of having a space that’s engaging and stimulating for Maggie to explore will make things more comfortable for her too.”