Robbie's story | Action Medical Research

Robbie's story

Cleft palate

"Robbie is independent, creative and has a real sense of humour,” says his mum Geraldine. “He also has a caring nature and is already finding ways to support other children born with a cleft palate.”

Shortly after his birth, Robbie was diagnosed with a condition called Pierre Robin Sequence. He had difficulty feeding and breathing due to a cleft soft palate and a small, receding lower jaw.

“It was a terrifying and really upsetting time,” Geraldine recalls. “Robbie could not be laid on his back and needed to feed every three hours using a special bottle. Changing his nappy was a real palaver because we had to lie him down on his front. And he had to wear a sleep apnoea monitor round his tummy every night for 18 months.”

Robbie had his first operation to close the gap in his soft palate at just three months old, and more surgery as a toddler. He was frequently referred to an ear, nose and throat specialist with hearing problems and unfortunately, even with weekly speech and language therapy, Robbie’s speech did not progress as well as hoped.

Aged 10, Robbie needed a big operation on his throat – a daunting prospect, since the surgery could have affected his breathing. Thankfully it went well but, even now, Robbie’s speech can be difficult to understand.

“Older children ask, ‘Why do you talk funny?’ and that’s hard for a teenager to deal with,” Geraldine says.

Researchers funded by Action Medical Research and Scotland’s Chief Scientist Office are using ultrasound to assess children with a cleft lip or palate – and Robbie has volunteered to help.

This work is invaluable, Geraldine feels: “Better information, especially ahead of a big operation, gives parents peace of mind that they are making the right decision for their child.”

  • Lead researcher Dr Joanne Cleland explains why she’s so passionate about helping children with cleft lip and palate here and you can find further details of the study here
  • The Cleft Lip and Palate Association offers support to families.

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