When Kristen Draime looked at her two-year-old’s baby monitor on November 8, her worst fear was confirmed – she knew her daughter had cancer.
The monitor had revealed a ‘glow’ in her daughter Miley’s eye, which turned out to be retinoblastoma.
‘I’d read an article about a mum who found a tumour in her daughter’s eye after she went to sleep on the baby monitor,’ Kristen, 28, recalls.
‘After we put her to sleep she was lying and had both her eyes open – it was so upsetting because I looked at the baby monitor and saw she also had a glow in her eye.’
But that wasn’t the first sign that something was wrong, it simply confirmed the mum’s suspicion Miley was very unwell.
‘A little bit after her second birthday in September we noticed her left eye was wandering,’ Kristen, from Cleveland, Ohio, says. ‘I pointed it out to my husband because I didn’t have a good feeling.
‘I had no reason to think of cancer, I didn’t know retinoblastoma existed.’
She sent a picture of Miley’s wandering eye to a paediatrician who referred her to an ophthalmologist, although they were going to have to wait until December to be seen.
‘They thought she needed glasses,’ Kristen adds. But before the young family could attend that appointment, things took a worrying turn in November when they were giving Miley a bath.
‘That night I saw her eye and thought “that’s not normal”,’ the mum explains. ‘We took a flash picture of her and saw the white in her pupil and I started freaking out.’
She began researching the worrying symptom online, with retinoblastoma -a rare cancer usually affecting children under the age of three – coming up as a possible cause.
It was that night she checked the baby monitor and saw the same white glow in Miley’s eye.
‘The next morning I covered her good eye with my hand and her other eye just went completely left, there was no vision in it,’ Kristen recalls. ‘We immediately went to the ER and I could tell they were concerned.’
An oncologist soon arrived and told the parents it was retinoblastoma, confirming Miley had no vision in one eye.
‘Even though I knew, to hear it was terrible,’ she adds.
An ultrasound and MRI revealed the tumour behind the eye which covered her Miley’s entire eyeball, and doctors told the parents it was ‘blastoma stage E, which is the worst’.
The two-year-old had her left eye removed on November 22, and is now waiting for a biopsy to determine whether she will need chemotherapy. Miley may also be getting a prosthetic eye.
She and her husband Andrew, 33, have been navigating this all while caring for their eight-week-old newborn Lilly and 13-year-old daughter Aniston, and have set up a Go Fund Me because they are unable to work while Miley undergoes treatment.
Now, Kristen is sharing her story with others in hopes other parents will know the signs to look out for.
Retinoblastoma
Retinoblastoma can appear in one or both eyes, and affects the back of the eye (known as the retina) which sends signals to the brain to help you see.
Around 44 children are diagnosed with this cancer each year in the UK.
The main symptom is a white glow or reflection in the pupil, which you may be able to spot just from looking at the eye, or in photos where flash has been used.
Other symptoms include:
- the eyes pointing in a different direction (squint)
- the coloured part of the eye (iris) changing colour
- swelling around the eye
- uncontrolled eye movements
- vision problems
- pain in 1 or both eyes
It can usually be successfully treated if found early, although there is a high chance your child will lose some or all of their vision in the affected eye.
Treatment depends on the size of the tumour, where it is, if it’s spread and your child’s age and health. It’s possible you’ll be offered chemotherapy, laser treatment, cryotherapy, radiotherapy and/or surgery.
Source: NHS
‘I would say the flash on my camera and the baby monitor saved her life,’ she says. ‘She had no vision for a month and we didn’t even notice. Having her eye removed has been hard to process, I’ll never see her two eyes again together.
‘I was hard on myself but I learned there wasn’t anything more we could have done, by the time we noticed the symptoms it was too late and we have no family history of this.
‘If anyone sees a light in their kid’s eye and sees white instead of red there could be a tumour behind the pupil.’
Doctors assured Kristen there aren’t many other symptoms, so it’s hard to spot.
‘Miley was completely normal, maybe a little clumsy, from losing her vision but I thought that was just toddler stuff,’ she adds. ‘Any kind of eye wandering, people should go to an oncologist.
‘Now I know baby monitors can help diagnose it, it’s wild, I had never heard of it.’
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