Cleft Lip and Palate Awareness Week

This week it is Cleft Lip and Palate awareness week in the UK which is arranged by CLAPA. When we were first diagnosed, the information that we got from the CLAPA website was like getting a big hug from all the fellow members sharing their stories, so you can imagine how proud I am that Ultan's journey  is being shared to fellow CLAPA members.  Everyday, three babies are born with a cleft in the UK. If Ultan's journey can give one of these familes a feeling of warmth and hope by seeing, his happy character, his happy smile and how proud we are of him, then this blog will have served its purpose.






Our relationship with CLAPA started when we were diagnosed at our 20 week scan and found many closed doors here in Hong Kong.  We turned to the UK for support and CLAPA was one of the first sites that I visited.  We also turned to professionals for guidance and someone who has played a huge part in our journey is Mr Alex Cash who from 7000 miles away was the first medic to diagnose Ultan after he was born (I was never any good at geography and I am making a complete guess that London is 7000 miles away from Hong Kong!)

Alex's area of specialist clinical interest includes management of cleft lip and palate.   Having Alex's professional opinion was not only informative to us but also relaxing as he told us what we should be doing next.  Leaving aside the medical support he gave us, Alex spent an equal amount of time reminding us to enjoy our baby, reminding us to behave the same way we did when our other boys arrived, reminding us that our baby will grow up very quickly and we only have one chance to enjoy him as a baby.  He told us, get the feeding right and the medical stuff will happen.  For us it is rare to find a Consultant to be such a realist with information and also humanist to the case, Alex holds both of these characteristics, educating both Mark and I with the medical aspect of cleft while reminding us that parenting Ultan is the most important thing.  He will always be the doctor who was the calm after our storm of diagnoses - we would highly recommend Alex Cash.

By far the worst part of being diagnosed with Ultan's cleft was relying on doctors' reading of scans to give me information.  My biggest fear during my pregnancy was not being able to feed Ultan after he was born.  A fear that would keep me awake at night.  On meeting Dr Valerie Pereira (who was awarded a PhD, Impact of maxillary osteotomy on speech in Cleft Lip and Palate by UCL Institute of Child Health, London) she was a calming influence for me and put me in touch with her colleague Ms Alex Forsyth who is the feeding specialist with the Great Ormond Street Cleft Clinic.  Alex really calmed me and directed me in what bottles are used in Great Ormond Street.  I will share Alex's information in another post but I will always be grateful to her go taking the time to reassure the pregnant woman in Asia!

When I write here, I am writing to the parents who are in the similar boat as the 20 week pregnant me.  A parent who wanted the best for her baby but was going around in circles trying to find the best info.  CLAPA, British professionals mentioned above and Joanna Chu here in Hong Kong were a big part in helping us through the pregnancy, because for me the pregnancy was the worst part.  In our journey, once we got Ultan safely in our arms all was OK.  He drank his first bottle without difficulty and Alex cash was right - get the feeding right and everything else will follow :)