The first screening

Adam, Aaron and I had just spent two beautiful weeks visiting family and friends in the US and so Aaron and I were a bit jet lagged when we went to the PRUH for what was meant to be the screening to check out his squint.

The poor kid also had a cold from travelling and was sound asleep to boot when we arrived at the PRUH, so it took a while for the orthoptist to get a look at his eyes. I told her about noticing the squint in photos and that a few of my cousins have had squints. The orthoptist told me how misleading photos can be in diagnosing a squint and that it's really only immediate family members having a squint - not twice or three times removed cousins - that would indicate Aaron was genetically predisposed. At that point, I thought maybe I had overreacted by bringing him in.

However, once Aaron opened his eyes and engaged with the tests, the orthoptist immediately said 'This isn't what I'd expect for his age' (5.5 months). She did a few more tests and wanted to bring in a specialist for a second opinion. The specialist ended up being gone for the day but another doctor, one from Great Ormond Street and so very experienced with children, was available and she joined us in the exam room. The two doctors looked at Aaron's eyes and spoke back in forth in medical terms but I was able to pick up a few things: Aaron was very sensitive to light and his cornea looked cloudy - things Adam and I had noticed but hadn't realised were symptoms of possible serious problems.

They released us with a promise to get Aaron back in immediately to see the specialist they'd been trying to find earlier. The NHS isn't big on preventative maintenance so the sense of urgency was an instant red flag.

Naturally I couldn't resist having a look on Google once we left. I know, I know searching online usually leads to descriptions of rare diseases featured on web sites you wouldn't trust to diagnose dandruff let alone vision problems but the Type A personality I am needed to get at least a sense of what we might be dealing with.

However, on this occasion the search was useful. I learned that sensitivity to light is caused by pressure in the eyes and this eventually led me to congenital glaucoma. The results were all from sites like www.glaucoma.org and congenital glaucoma was pretty much the only thing coming up that could be the problem. The disease sounded scary, rare (1 in 10,000 babies are affected) and treatable mostly by surgery.

Meanwhile, within 10 minutes of leaving the PRUH (!) I got the call that we needed to come back the next day for an eye clinic with the specialist. Friends and family advised me to stay positive and avoid assuming my Dr. Google diagnosis was accurate.

Dinner at our house that night was subdued but we thought there must surely be some other reason for Aaron's symptoms - the rarity of congenital glaucoma made it seem too implausible. All we could do was wait for the clinic.