Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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KelseyMy name is Kelsey West. I was born on 13th August 2002 and weighed 7lb 91/2 oz. I also have DiGeorge syndrome.

When my Mum, Julie was pregnant with me, my Mum and Dad, Nick went for a 20 week scan where they said that I had a hernia.

I remember my Mum crying and being told to come back tomorrow for one more scan.
KelseyThe next day Mum and Dad came back and were told it was the liver on the outside and called it an exomphalos.

My Mum said to the scan lady that she was going to carry on with the pregnancy.

We then had to go for a scan on my heart where they told my Mum and Dad that I had an interrupted aortic arch and a VSD and they did not think I would live.

My Mum said that I would and always used to tell me that each night.

On the day I was born there were 17 doctors and nurses in the room waiting for my arrival. I was born at 2.02pm on Tuesday 13th August 2002.
KelseyAt 3 days old I was taken down for heart surgery from which I made a good recovery and then at 7 days old I had the exomphalos repaired.

After 2 weeks in Guy's I went to my hometown hospital where I spent 24 hours being rushed to Lewisham where they found about a week later that my intestines were not joined and I had a broviak line put in.
KelseyAt about 31/2 months I had a gastrostomy and a jujenostomy while I was at Lewisham.

I had a week there before I went HOME for the first time in 5 months on Christmas eve.

My Mum and Dad now do all my care!
KelseyThank you Mum and Dad!



KelseyShortly after this letter was written, Kelsey's condition worsened and she was readmitted to Guy's Hospital. Kelsey's courageous grip on life slipped away on Friday 17th January 2003 and she went to sleep for the last time as she lay peacefully in her mother's arms.

All of us at Max Appeal and everyone at the Children's Heart Federation, along with Donna McDonald-McGinn at the Children's Hospital of Philadelphia, send our sincerest wishes to Julie, Nick and Konner at the sad loss of 'Bunny'.