Russell Silver Syndrome

Our daughter Nancy Beatrice Nolan joined the world 3 weeks early on 19th August 2014, weighing in at 5lb 4.5oz.

In the weeks and months that followed Nancy failed to grow or gain weight as you would expect a baby would . She wasn’t taking much milk - 2oz at a time if we were lucky.

We were referred to a pediatrician who was concerned as, quite bluntly put, he didn’t feel it was normal (using the word loosely) to go from a 10lb baby (our first born Archie) to a 5lb 4.5oz baby.

Dr Mir organised a variety of test including bloods, MRI’s, X-rays and scans which all came back ‘normal’. Meanwhile Nancy was meeting all the development milestones and was a happy baby. It was a whirlwind of appointments and consultations and was an extremely worrying time for us.

On 6th November 2015 we saw a geneticist and Nancy was diagnosed with Russell Silver Syndrome. She also has body assymmetry, using a lift to correct right leg length, and is ketonic hypoglycaemic. Thankfully we found the Child Growth Foundation.

CGF along with its members have been a lifeline for us. I know I wouldn't have gotten through the last year with my sanity intact without their support. They have given us advice and support which has enabled us to ensure Nancy has an appropriate care plan in place and is being supported by all the appropriate specialists.

Nancy began GHT in June 2016. At her 5 month check up she had gained 2lb and grown 3.1cm. We are awaiting an app in Jan 2017 to discuss introducing a peg feed overnight.

More importantly Nancy is happy answer loved. She is am amazingly brave girl who we are exceptionally proud of.