Tagged with:Pierre Robin Sequence
After Clare's daughter, Sophie, was diagnosed with Pierre Robin Sequence and a cleft palate, Clare turned to the CLAPA website for information and support. Her family have recently raised an incredible £448 for CLAPA with a socially distanced cake sale!
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...
Pierre Robin Sequence
Katherine was born with Pierre Robin Sequence and a cleft palate in the 80s.
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?
Marianne Ryan’s Story
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.