Thursday 23 December 2010


Before Joseph was born I had never heard of ROP, retinopathy of prematurity, but unbeknownst to me, I was aware of someone who has been affected by this condition. Stevie Wonder lost his sight due to ROP.

When babies are born prematurely many things have not quite finished developing and the eyes are one of the things that are particularly vulnerable. Some of the things that happen on the neonatal unit, such as oxygen therapy, can damage the eyes, causing ROP.

The good thing about ROP is that, unlike in Stevie Wonder's era, its largely preventable. Here in the UK there is a defined protocol  for detection and treatment of this condition. I won't go into detail here about the ins and outs, but have linked to the protocol if you want to know more.

Joseph had his first examination when he was 30 days old. His examinations were fortnightly until discharge, on a Tuesday. The examination consists of regular administration of eye drops in the hours leading up to the test. Then a highly qualified opthalmologist looks at the babies eyes. This is not a comfortable procedure. The first time it was done, I was asked to leave the unit, not just the room, which I did.

The second and third times the test occured in a seperate room. I could hear Joseph screaming from down the corridor. I was incredibly distressed. I was not permitted to be in the room with him, as it was considered to be too distressing.

When it comes to eyes, I am not squeamish. I had procedures done as a child, I have supported my clients in eye examinations when I was a carer, I found it far more distressing that my child was upset and I was not there.

Joseph was due to be discharged on a Tuesday. The opthalmologist was late, and didn't get to the unit til after 3, and had to see some outpatients first. I was chomping at the bit to get my child home, I really really wanted to see the back of that place. The lovely opthalmologist called us in, the nurse that was assisting got called away. The opthalmologist apologised and said that he would postpone the test until the next day. I went white. "You can't, I want to go home, my baby needs to go home, what do I have to do?" The opthalmologist looked at me and said "well, in 20 years of practice I have never seen this, but you could hold him, but most mothers would pass out". One of the nurses overheard and called out "Kylie isn't most mothers, she'll be fine".

Joseph was swaddled, lying on my lap. I sung gently as the eye doctor clamped Joseph's eye open and started looking behind it. Joseph didn't cry. He whimpered a tiny bit, but he didn't cry. The doctor moved to the other eye.

As the test finished he said to me "you could be an opthalmic nurse, you've done a marvellous job. Now go home!"

On that note, discharge was complete and we were out of there, 76 long days had come to an end! And Joseph didn't have ROP.

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