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Lily Margaret

Lily Margaret 04/02/2016 – 06/03/2016

In memory of our beautiful daughter, Lily Margaret Smith. Following a very healthy pregnancy, Lily was born at 39 weeks weighing 6lb 6oz. Lily was unfortunately diagnosed with full T13 at 1 week old. We brought Lily home and she was with us for 31 precious days. These memories will stay with us forever.

Our daughter Lily was born on Thursday 4th February 2016 by c-section, weighing a very healthy 6lb 6oz.  12 hours later, after some time spent trying to feed Lily, she was diagnosed with having a cleft palate.  She was taken to the Neonatal Unit where we established tube feeding.  1 week later our nightmare began.  Lily was diagnosed with full Trisomy 13 and we were told that her life expectancy would be measured in days, perhaps weeks.  It would not be months or years.  I cannot put into words how devastating this news was to our family.  For something so serious to have gone undiagnosed in this day and age was a surprise.  

Following Lily's diagnoses, we were left with decisions to be made - do we bring Lily home? leave her in hospital? or arrange to transfer her to a Hospice?  

We decided to bring Lily home and this is the best decision we could have made.  We had 2 glorious weeks spent with our beautiful daughter.  We got to experience life as a "normal" family and organised a large party where family and friends got to meet Lily, have a little hold and cuddle, and let her know how loved she really was.  

Sadly the following day, whilst we were feeding Lily, she opened her eyes and had a final look at Rab and I.  That moment was her last breath.

Nothing can ever heal the pain of loosing a child, but when you know her mum and dad were the first, and last, people she saw in her little life, it does gives you immense comfort.  

We will never forget Lily and she lives on through our hearts.

Rab & Gilly Smith

SOFT Child

Lily Margaret

Condition: T13
Relationship: Mother