Tagged with: Pierre Robin Sequence

  • Two Sides – Indy’s Story

    10 May 2017

    It was difficult watching my partner deal with her feelings of guilt over not being able to feed our daughter, and although we had been advised all was normal, I felt continual concern over Eva-Rose’s inability to feed - something just wasn’t right to me.

  • Rachel’s Story

    8 Jul 2016

    It's the 9th March 2015, the day we have been waiting for. I had been induced two days prior due to high blood pressure, but today will be the day we meet our baby. The little baby we have been so desperately trying for for the past 3 years. We had our first child in 2010, a healthy (big) baby, Ella-Rose Corbin. She has been desperate to become a big sister for as long as I can remember; blowing out birthday candles wishing for a sibling that she could love, cuddle and feed. Today was going to be that day, except it's going to be a little different to how we had all imagined...

  • Jessica at 6 months old with mum Marianne

    Pierre Robin Sequence

    4 Nov 2015

  • Katherine’s Story

    19 Feb 2015

    Katherine was born with Pierre Robin Sequence and a cleft palate in the 80s.

  • Lily’s Journey

    18 May 2014

    Over the next couple of weeks we learned more about the condition and how to handle our baby confidently and then the shock question came! Which one of us parents would insert the NPA tube and feeding tube when Lily goes home?

  • Jessica at 6 months old with mum Marianne

    Marianne Ryan’s Story

    18 Jun 2011

    These early days were incredibly difficult as my husband and I struggled with her condition. She couldn’t use many of the things we had bought for her, such as car seats, bouncers and baby slings. This sounds so trivial now but was heart-breaking at the time as we realised that we had a baby with special needs.