Poppy – Congenital Cataract

DSC_0499editcrop

Poppy was born two weeks early weighing a healthy 7lb 2oz on the last day of September 2012 in Northampton, England.  It was only when Poppy was 3 weeks old that my husband noticed there was something wrong with her left eye, one evening while pacing around the lounge to try and soothe her to sleep.  She had been having none of it and was wide awake despite having just been fed – it was a familiar scene in our house: all our newborns slept most of the day and became wide awake all evening.  Anyway, we looked at her eye and agreed it didn’t look right.  The pupil looked silvery and cloudy rather than black.

POPPY, 3 WEEKS OLD – WHEN WE FIRST NOTICED THE CATARACT

DSC_0128 edit

I immediately Googled it, desperately hoping that I would find something somewhere that would say newborn eyes sometimes look like that and that it is nothing to worry about.  Unfortunately all I found was information on cataracts and retinoblastoma (cancer of the eye) and suddenly felt very worried.  We took a photo of her on my phone to look for the red eye – as this was a sign of a healthy eye…the right eye was red but the left eye remained dark.  This was on a Friday and so we spent all weekend worrying about it before I got a chance to take her to our GP on the Monday.  My GP looked at her eyes with her ophthalmoscope and said she thought she saw a red light.  I told her about the photo I had taken and so she had a closer look and finally she saw what we saw.  She said it was most likely a cataract but did mention retinoblastoma as well and so referred us straight away to the eye outpatients at the hospital.  I was very worried and shocked.  I was also shocked that this was missed by at least two doctors in hospital along with the midwife, health visitor and nearly the GP who only seemed to spot it once I had urged her to check again.  I know newborns spend a lot of time asleep and I now know how rare cataracts in babies are, but still, I am shocked that it could be missed.

So we went to the eye outpatient’s clinic and met the paediatric ophthalmologist for the first time.  He confirmed that it was a congenital cataract.  It wasn’t so much of a shock as it just confirmed what we already knew was likely, but at least cancer had been ruled out.  He explained how it would need to be removed, and soon, otherwise she would be blind in her left eye for the rest of her life.  She was only three weeks old and there was no one in our county that was willing to undertake the procedure because of having to give a general anaesthetic to such a young infant.  The P.O recommended we take her toKingsCollegeHospital in London.  The consultant ophthalmologist there had taught him and he believed him to be the best man for the job.  He explained that the lense with the cataract on would be removed and an artificial lense would be fitted into her eye.
The following week we travelled to London for a consultation with the doctor and her surgery was arranged for two weeks after that.  She would be just six weeks old.
POPPY, 6 WEEKS OLD – JUST AFTER HER OPERATION TO REMOVE THE CATARACT AND HAVE AN IOL FITTED
IMAG1656
We had to get to the hospital in London for 7am.  We live 90 miles from the hospital so it meant an early start.  We were told Poppy had to be nil-by-mouth for 6 hours prior to the operation.   Poppy was an absolute star though – she had a dummy for the first time (and only time to-date) and drifted in and out of sleep in her buggy the whole time we waited.  Finally at around 10.30am I walked around to the theatres with her. They let me stay while she drifted off to sleep. This was the moment I had been dreading, but surprisingly it wasn’t too bad. Perhaps I was feeling a great sense of relief that the waiting was over and she was finally going to have the operation which would save her sight.
POPPY, 3 MONTHS OLD (6 WEEKS AFTER HER OPERATION)
DSC_0012
Poppy is now 8 months old and doing very well.  She began patching soon after surgery for 5 hours a day.  Some days are tough but we persevere.  She got her first pair of glasses at 5 months and (so far!) is managing to keep them on!  We go for a check up with her P.O every 8 weeks at the moment.  Her eye pressure is okay for now but we constantly worry about glaucoma.  The scar tissue is building-up at the back of the eye and the eye is turning in, so surgery will be needed to correct both of these in the not-to-distant future.  The doctor told us it would be a long journey, but Poppy is surrounded by three siblings and a mummy and daddy that love her dearly and we will be with her every step of the way.
POPPY, 5 MONTHS OLD – WEARING HER FIRST GLASSES AND PATCHING

Leave a Reply

Your email address will not be published. Required fields are marked *