My daughter, Niamh Mary Williams, was born on 22nd of September 1999, in Wrexham Maelor-North Wales in the UK.  She was two weeks late and I went into labour the night before I was due to be induced !!  She had to be delivered by emergency section in the end, as the chord was around her neck.  We were sent back to the ward and all seemed well.  She was tiny -- 5llb12oz -- and her skin seemed too big for her !!   At dinnertime, I asked if they could take her to have a bath, as she was still gunky.. That was the start of a very traumatic time.

The nurse thought that she looked dusky.  She was then rushed to special care and put in an incubator.  We were told that there was something seriously wrong with her heart, but they didn't know what.  She was taken by ambulance with a police escort to Alder Hey.  She had a thickening of one of the walls of the chamber in her heart.   They later found that this was because her heart had been working too hard due to aortic stenosis and pulmonary stenosis.  She stayed in the hospital for a month and was given medication to try and rest it.  Anyway, at her third catheterization in Dec 1999, things went badly.  They wanted to balloon the narrowing, but things didnt go according to plan, as there was no elasticity.  They pierced the sac surrounding the heart and she was sent to ICU.  What a lovely first Christmas that was!!  They had discovered lots of narrowing, supravalvular.  She had a chest drain and drip in her head.  She also swelled up.  She was heavily sedated for awhile too.

From this catheter, they thought that she might have a condition called Williams syndrome??!!  Are you sure you haven't got mixed up, as her name is Williams??   I had obviously never heard of this.  He did tell us it was a nice syndrome to have and left it at that.  When we went home, I started looking on the internet...nice eh..you couldn't have hinted at any of the not nice stuff could you-it would have been nice to have been warned.  She had the FISH test in March 2000, which came back positive -- another one of the worst days of my life !!

Anyway, we are now a long way away from all that horribleness and accept Niamh for who she is, not what she has!!  She is 2 1/2 now and is most of the time a loving, placid child, but she's always had a very bad temper.  In fact, for the first few months she looked very cross!! Her heart is being scanned every 6 months, improving all the time.   The thickening went away as she grew.  Surgery is not ruled out for the future.  She has had raised calcium levels and is on a restricted diet.  She now eats very well compared to what she did and is finally starting to put weight back on!!   I have had a lot of trouble with her pediatric care, as she was so ill last summer due to raised calcium.  They just said she had constipation!!  She is babbling and communicates with her own signs!!  She has now discovered that shes got legs and wants you to pull her to standing (all day!).  She has PT and ST.  We have seen a psychologist, but she doesn't get back in touch with any advice!!  She goes to a therapy group one morning a week and will be starting mainstream play group with a helper after Easter.  She has a squint which comes and goes.  They told us last week it had gone!!  Her vision seems fine, but is still getting tested under protest!! The picture is from when she was 11 months old.  She has now got mad curly hair !!

I have found the foundation/org websites extremely useful and have recently joined the list-serve, which is sooo good --to talk to parents all over the world in the same boat -- and also, there are some older WS people on it too (inspirational!).

Take care
Michelle (UK) Mum to Niamh WS 2 1/2