The world's largest ever cleft lip and palate research programme is being launched and aims to collect DNA from all cleft children born in the UK and follow their development to adult.
Rachel McDermott, whose 20 month-old daughter Emily has a cleft lip, described how she was unable to feed normally until she had an operation at three-and-a-half months.
She said that after finding out at her 20 week scan, she feared that her child would have to go through a lifetime of operations and she would not be able to protect her from that.
Professor Jonathan Sandy, lead researcher for the Bristol gene bank, which will be collecting the DNA, said that the centralisation of services for children with cleft lips and palates by the NHS is a big opportunity to look at how these children grow up as well as connect the genetics that go with that.
He said that "if they can target children who are susceptible because of their genetic make up, they can improve enormously their development".
"There are environmental factors as well," he added, which are not understood but he said that by following these children they might be able to learn more about those factors.
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