Like all babies, Oliver Hutchinson’s first real smile was a beautiful moment. But for Oliver and his loving family, it was extra special.
Oliver was born with a cleft lip and Alveolus. It meant that, very early in his life, he needed to go to Alder Hey Children’s Hospital in Liverpool for an operation. He will require more surgery when he is older when his second set of teeth are due.
But mum Charlotte Hutchinson, 35, is determined to use her experience to assist parents in the Isle of Man whose baby is born with the rare condition.
Charlotte, of Tromode, has become an official parent contact on behalf of the Cleft Lip and Palate Association, which assists people who have children born with the condition. She has also arranged a charity ball at the Hilton Hotel, Douglas, on March 14, to raise money for the association and Alder Hey.
‘When Oliver was born, everyone at Noble’s Hospital was very good, but we had to go away for the specialist treatment,’ said Charlotte. ‘Because it is such a rare condition, there was no specific support network for parents in the Isle of Man.
‘One in 700 children a year are born in the UK with the condition and the statistics in the Isle of Man suggest it may be two a year here. Since Oliver was born in April, I have heard of three babies born here without a palate.
‘I am just trying to raise awareness that this is happening and that the support needs to be in place.
‘I am stepping into the role of being a parent contact, not to give the medical advice but to give the emotional support to deal with it, to direct parents to the right people to talk to.’
Charlotte added: ‘Having a baby is a very emotional time anyway, so when you discover your baby has a rare condition, it can be even more traumatic.’
It is something the whole family has to deal with. Fortunately, although it was a difficult time for Charlotte, dad Mark and brother Thomas, now four, the experience has made them closer – and a stronger unit.
But, as part of her training, Charlotte has heard harrowing tales where some branches of a family have found it difficult to cope with the shock of a child born with a cleft lip or palate and have even shunned the baby or the mother.
Part of the problem, Charlotte believes, is because so little is known about the condition and what causes it.
It is a serious condition and can have many implications for the baby and the mother. Breast feeding becomes difficult if not impossible and even bottle feeding can require specialist equipment. This can obviously be traumatic for both the mother and the child.
Depending on the type of condition, it can have other wide ranging effects, especially to do with the development of the mouth, and can also cause hearing and speech problems. Oliver will need another operation, taking a bone graft from his hip, to splice his gums when he is older.
Children born with a cleft palate normally face an operation between the nine-12 months stage, whereas those such as Oliver with a cleft lip are operated upon earlier.
The first operation to deal with Oliver’s unilateral cleft lip and gum, which took place last summer, was a success and Charlotte said the resulting scar would continue to fade. The inside gum line will still be open and his teeth will remain separated and could have visible differences. This can start to cause the child confidence issues from an early age, so awareness and acceptance on why he may appear different is something Charlotte wants to encourage positively.
Charlotte said that in some respects it was the reaction of other people that was the hardest thing to deal with. Some, mainly strangers, were not able to disguise shock when they saw Oliver for the first time and others did not know what to say.
‘Fortunately,’ said Charlotte, ‘I’m quite prolific on Facebook, so the vast majority of people who knew me well were aware of Oliver’s situation and many had seen pictures we posted of him.
‘It was the people who were taken by surprise who, through no fault of their own, did not know how to react. But, as a mother, it was quite difficult to deal with that kind of response.’
The majority of people, however, particularly once they understood more about the condition, were supportive and saw Oliver as the beautiful, happy little boy he was then and continues to be.
‘Many people remarked upon his eyes,’ said Charlotte. ‘They could see what a happy baby Oliver was.
‘Obviously Mark and I were a little worried about how Thomas would cope but children at that age don’t focus on the superficial, they are very straight forward. I think Thomas asked about it just once at the beginning and then got on with the fun of being a big brother and was more concerned he had no hair!’
Charlotte can be contacted on 07624 434369
- A charity ball to raise money for CLAPA and for Alder Hey Children’s Hospital takes place on March 14 at the Hilton Hotel in Douglas. All 200 Tickets have now been sold but if you wish to donate, you can send a donation to C. E. Hutchinson at 48 Cedar Walk , Tromode, Douglas, Isle of Man IM2 5NL. It will be sent CLAPA and Alder Hey, or you can also support the fund raising event via https://www.justgiving.com/Charlotte-Hutchinson1/
Cleft means ‘split’ or ‘separation’. During early pregnancy separate areas of the face develop individually and then join together. If some parts do not join properly the result is a cleft, the type and severity of which can vary.
The Cleft Lip and Palate Association was set up in 1979 as a partnership between parents and health professionals. It provides support for new parents, and for people with the condition and their families, from infancy through to adulthood.
It organises parent support at regional level and runs a specialist service to help with feeding babies with clefts.
It develops support for children and adolescents affected by clefts at school and in social settings.
In addition it encourages and support and research into causes and treatment of cleft lip and palate, raises funds for equipment and services and aims to increase public awareness.
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