Our baby was born with cataracts

WHEN Samantha Freeman tucks her three-year-old son Monty into bed at night he has an unusual request. Instead of asking for an extra bedtime story or to stay up late Monty will say: “Don’t forget to take my eyes out mummy,” referring to his contact lenses. 

Monty was born with bilateral cataracts, a rare childhood condition which affects just three in 10,000 children in the UK each year.

His cataracts are a result of a hereditary condition called posterior lenticonus which prevents the focus lens at the back of the eye from developing properly.

Monty’s vision has been clouded since birth and he has worn contact lenses since he was 11 months old.

Sam, 34 and partner James, 37, who live in Putney, south-west London, first noticed something was wrong with Monty’s sight a few weeks after he was born.

“He was always squinting but I was told it was normal and he would grow out of it,” says Sam. “As Monty grew he became fascinated by light and when he was playing with toys he would hold them up to his nose as if smelling them.”

Monty was diagnosed with bilateral cataracts when he was six months old and was referred to London’s Great Ormond Street Hospital (Gosh) where doctors confirmed posterior lenticonus was the cause of the cataracts.

Over time, this abnormality causes the lens cortex (or outer layer) to become opacified, which can lead to cataracts. Gosh paediatric ophthalmologist Mr William Moore says: “Posterior lenticonus cataracts are a particular type of childhood cataract which cloud the eye.

“The effect is similar to a normal window turning into a frosted bathroom window, giving shapes less definition, blurring images and making it harder to see objects.”

Sam says: “We don’t know whose side he has inherited it from and we would prefer not to find out. We know Monty’s children will most likely inherit the condition although it can skip a generation.”

Monty’s younger brother Miles, now 20 months old, does not have the condition.

In March 2011 Monty underwent two hour-long lensectomy operations, one on each eye and a week apart.

“We need to operate on both eyes no more than a week apart so the brain doesn’t start to favour one eye over the other,” says Mr Moore.

In most cases an intraocular lens (IOL), a lightweight clear disc which focuses the eye in the same way a contact lens does, is then inserted but Monty’s eyes were too weak to undergo such a procedure so he was prescribed contact lenses to project a focused image on to the back of his eye.

Sam says: “At first we had to pin him down in his pram to get them in, which was awful. James would hold his head still and open his eyelids so I could pop them in.

“Sometimes it would take us 30 minutes just to do one eye. Monty was traumatised by the whole process but the change in his behaviour when he was wearing the contacts was immediate. All of a sudden he was exploring other toys that he hadn’t played with before.”

It’s only now Monty can speak that Sam and James realise just how much he relies on his lenses.

“When I take the contacts out at night and lean in to kiss him goodnight he brings his hands up to my face to touch it. It’s almost as if he’s blind. It’s heartbreaking.”

Sam takes Monty for check-ups every three months and says: “We don’t know what the long-term damage to his eyesight will be.”

Now he is older Monty, who also has to wear bifocal glasses, doesn’t mind having his contact lenses put in. “When he turns five I’m going to teach him to put them in himself,” Sam adds.

Samantha, Monty and family took part in the RBC (Royal Bank of Canada) Race for the Kids 5K fun run in aid of Great Ormond Street Hospital Children’s Charity. To find out how you can support the charity, visit gosh.org