Poppy First Pair of Glasses

Last week we went to the opticians and picked up Poppy's very first pair of glasses.  She is just 4 months old and even the smallest ones they had are a little too big at the moment.  So she is now wearing her glasses all waking hours and we are patching for a few hours each day.  I am pleased with the glasses as it seems her vision is a bit better in them (that is when they are not slipping off and she ends up chewing them!).  However, the patching is not getting any easier.  We have been patching since before Christmas although I was not very strict about it to begin with and we had days where we didn't do it.  Since our last visit to the opthalmologist though we have been doing it every day for a good few hours.  The optometrist and opthalmologist both highlighted the importance of patching and since joining a facebook group I have learnt from other parents just how much difference to vision patching can make in the long-term.  It is very difficult though and within half an hour of applying the patch Poppy is not happy and will start crying.  I have tried to eliminate all other reasons as to why she could be crying - feed her, let her sleep if she is tired etc. but it is very obvious that it is done to the patch: as soon as it is taken off she stops crying.  I know we just have to persevere though.  I am concerned that the scar tissue that grows on the back of the eye commonly after a cataract operation is the reason why she is tolerating the patch less and less.  I think it is getting worse and I know that she will have to have surgery to remove this soon.  I am dreading having to go to hospital with her again and going through the whole nil-by-mouth and general anaesthetic scenario again, but really we need to do it sooner rather than later for the sake of her sight.  Anyway, one positive at the moment is finding two really great Facebook groups: one for parents of children that wear glasses and one for congenital cataracts.  It has already proved to be a great support network for us.  There are parents from all over the world on there going through the same thing and it is great to be able to share experiences and advice. 

I will leave you with some pictures of Poppy over the last two weeks with her new glasses, patch and siblings:

The beginning of our story

2 weeks before she was born

Her birthday!

1 day old

2 days old

3 days old

Poppy Mary was born two weeks early weighing a healthy 7lb 2oz on the last day in September 2012.  I had pre-eclampsia and had to be induced early.  They broke my waters and within a few hours I began labour.  However, I ended up with an emergency c-section under a general anaesthetic as her heart rate suddenly dropped after they decided (wrongly) to give me a hormone drip.  Anyway, Poppy arrived and all was well.  I stayed just two nights in hospital and after having the paediatric checks we went home to a very excited household of three older siblings. 

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.  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 opthalmascope 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.

3 weeks old - when we noticed the cataract in her left eye

What happened next...

So we went to the eye outpatients clinic and met Mr Chan the consultant 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.  Mr Chan 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.  Mr Chan recommended we take her to Kings College Hospital in London.  The consultant opthalmologist 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.

I spent the next two weeks worrying, trying not to cry and googling everything to do with congenital cataracts and educating myself on as many aspects of the subject as I could -  in between looking after four children.  Knowledge is empowering, but it is also very unnerving when it concerns your newborn child.

The day of her Operation

Waiting to go into theatre

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.  This meant her last feed had to be at 2am and her surgery would take place around 8am.  I read up on it and a lot of hospital guidelines actually seemed to say 4 hours for breast fed babies, and so I decided I would give her her last feed at 4am (it later turned out that it was 4 hours - they told me this once we got to the hospital).  This was another stress to add to the day as Poppy was used to feeding at least every 2 hours.  Another stress factor was sorting out what would happen with the other children (aged 6, 4 and 2).  We decided that the best option was for my husband to stay at home with them, especially if Poppy had to stay in over night and they wouldn't be as disrupted from their routine that way.  My Dad kindly offered to drive us down to London, which helped greatly.  So we got there at 7am and I was already worrying about her screaming the place down due to no feed, so I tried her with a dummy and kept her in her buggy as long as possible so that she didn't smell me (and scream for milk)!  Luckily as Poppy was the youngest she was first on the list.  However, because of the short-notice of the operation and the distance we live from the hospital we did not attend a pre-op asssessment and so it was necessary for them to take some blood from Poppy to ensure she was fit and well to undergo the operation.  I could not watch as they attempted to get a needle in her little arm.  They ended up having to extract it from her hand.  They then said they had to ensure there was a bed available for her to stay in over night if necessary, and when they could not confirm one was available we were switched to second on the list. They even said that the operation would not go-ahead if a bed was not found.   This was awful as I knew it meant a 2-hour delay, which meant an extra 2 hours of nil-by-mouth for her.  But more importantly the operation being delayed meant that time was running out to save her sight in that eye.  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. 

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.

A few hours after her surgery 

The day after surgery

Two weeks post op.

Poppy's first Christmas - 6 weeks post op.