MY STORY | My baby could have lost his eye if I didn’t push for answers

When Erica Croxford first noticed a red mark on her new-born baby’s face, she first thought it was from lying on his hand – but when it refused to fade, she had a niggling suspicion it might be something more serious.

Erica’s maternal instinct was correct. Doctors discovered her son, AJ, had a rare type of tumour in his left eye and they were able to save his eye with cutting-edge radiation therapy.

The 37-year-old mom from Howick in KwaZulu-Natal is sharing her story to encourage other parents to persist if they’re concerned about their children’s health.

AJ was just two days old when I noticed the little red mark on his cheek. I left it but a couple of days later I noticed the mark was raised. When we went to the paediatrician for a check-up, I asked about it but I was told it wasn’t anything to worry about. 

This was how his eye looked just before the diagnosis. (Photo: Supplied)

Four months later, in the middle of December, I noticed AJ had a little wart on his armpit. The GP said it might be a viral wart, and that we should watch it. 

Then, shortly before Christmas, his left eye was a bit red so I took him back to our GP, who said it might be pinkeye. He told us to use eyedrops. About a week later, just after New Year’s Day, AJ’s eye was swollen and milky, his pupil was huge and glazed, and his eyeball looked like it was going to pop out of his head. 

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The GP referred me to an ophthalmologist who said AJ might have congenital glaucoma (a rare childhood condition caused by the incorrect development of the eye’s drainage system). But, to be safe, he referred us to a paediatric ophthalmologist and started treating it with steroid drops.

The paediatric ophthalmologist first thought it was a retinoblastoma, a type of cancer, because when he looked in AJ’s eye, he could see a mass. AJ had a scan and we were relieved when we were told the mass was not cancer.

AJ then had to undergo an MRI, but because he’s a baby, he had to be anesthetised.

AJ after the sight-saving procedure in hospital. (Photo: Supplied)

Before he went under, the paediatric ophthalmologist said he remembered reading about something called juvenile xanthogranuloma, a rare type of tumour that mostly affects infants and young children.

He asked me if AJ had any marks on his body, and I said ‘yes’. That’s when he said it could be juvenile xanthogranuloma. While he was under for the MRI, they biopsied the wart and discovered that it was, in fact, juvenile xanthogranuloma. The condition caused a growth which developed in his left eye, but luckily it was not cancerous. 

AJ went under the knife five times. The paediatric ophthalmologist had tried to get it under control without radiation treatment but nothing got it under control. 

He contacted Dr Hamzah Mustak, an ocular oncology and oculoplastic specialist at the University of Cape Town, to arrange with him to perform a specialised procedure using brachytherapy, where irradiated material in a capsule is temporarily placed in the affected area. In AJ’s case, the implant was placed in his left eye socket for about 17 hours.

If this the surgery hadn’t been an option, AJ could have lost his eye. His life could have been so different. 

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We are very lucky that we landed up with our paediatric ophthalmologist when we did, that he remembered the condition, and of course Dr Mustak was just amazing. 

AJ with his dad Mike, mom Erica and sister Veronica. Erica says they are very thankful to all the amazing doctors who helped them with AJ. (Photo: Vix Photography)

It’s been a month since AJ’s sight-saving procedure. Because of all of the steroids and radiation treatment he has a cataract which will be removed next week, and in a month’s time he will be fitted for glasses, so everything is looking positive. 

I want to raise awareness about AJ’s condition, because how many kids are there who might be misdiagnosed with cancer, for example, and who might lose an eye unnecessarily?

Luckily this was not the case with AJ. This also made me realise that we have some exceptional doctors in South Africa who are quite easily accessible. 

Playing with his sister. Erica says he has been such a trooper and is a happy baby. (Photo: Supplied)

Right now, we’re just have to wait and see how his eye is healing, but AJ is such a happy little baby. If you did not see his eye, you would never say there was anything troubling him. 

To all the parents, if you see something that you are worried about, you must push to get an answer. Don’t just accept it.

EXTRA SOURCE: DERMNETNZ.ORG