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Sarah – Born 26 July 2012

This is Sarah Jane Louise.


Sarah is my 3rd child. I also have 2 older boys. When I went for my 20 weeks scan and was told I was having a little girl I was over the moon, it was my dream come true. Sarah was born on 26/07/12 by elective C-section as I had problems in previous deliveries.


When the nurse had shown me my little girl she took her over to the cot to do the normal checks. At this point I was asked whether either of my other children had high palates to which I responded no. I was asked how I was going to be feeding Sarah and told that they could not feed her until a doctor had been to check her mouth.


After spending some time in recovery having cuddles with my baby, we were taken up to the ward. Within 10 minutes of being on the ward the doctor came and told me Sarah had PRS and a full cleft palate. She was taken away from me 5 minutes after this to special care where she was attached to sats & apnea monitor and had ng tube inserted for feeding.


Sarah spent 3 weeks in special care where they showed us how to do her feeds and got her breathing stable laying on her side as they would not allow her home laying prone.  We tried many times to get Sarah to feed from a bottle but she refused.


After many months of hospital trips to insert ng tubes it was decided it would be best for Sarah to have a g tube inserted into her tummy. Sarah had her first cleft repair on 8th July 2013. She also had grommits fitted as her hearing had also been affected. After a very long week of being nil by mouth Sarah is now back on normal foods.


Before her op she was only taking 10% of her fluid intake orally. She is now on around 80% so hoping the peg can be removed when she has her next cleft surgery in 6 months time.


The big op comes when she is 3 as Sarah also has ASD (hole in the heart) which will require open heart surgery. My little angel amazes me every day; she takes everything in her stride.