A cleft is a congenital defect (i.e. one that occurs in the womb) that can affect the lip, the palate (roof of the mouth) or both. “It is essentially a failure of fusion,” explains Dr Fysh, EmbryoCare’s Chief Medical Officer. “It means the components that ultimately should form the lip and roof of the mouth do not come together as they should during foetal development.”
1 in 700 babies in the UK suffer from this condition and yet the general public may not be aware of this since the medical management of such a diagnosis here in the UK is generally swift and highly effective.
“In fact,” says Dr Fysh, “despite the often quite shocking look of a newborn with this condition, the prognosis for most children receiving co-ordinated care early on is excellent, both in terms of function and appearance. But this doesn’t diminish the fact that the process of discovery, diagnosis and treatment can be fairly traumatic for those suffering from the condition or for their carers, and is likely to require a care plan that takes the child through to about 20 years old.”
A cleft of the lip will often be identified during ultrasound scans, however isolated cleft palates can be more difficult to spot.
Dr Fysh explains: “Usually it’s the cleft palates without the associated cleft lip that we miss. In order to spot these in a scan the baby would have to actually open its mouth to reveal the gap.”
Aside from the impact on the facial appearance of a child, a cleft lip or palate will almost certainly impact the child’s feeding.
Further complications occur in the form of:
Although this condition requires surgery (sometimes multiple) on young babies, the good news is that outcomes are generally excellent. Once diagnosed a team of specialists will step in and options to help families cope will be presented. The first concern is likely to be feeding, but there are a number of solutions to overcome the issue of achieving suction that a young baby with a cleft will experience. Once the child is settled and comfortable a care plan will be created, bringing together several specialist teams in a co-ordinated programme of management for the condition. People involved might include: ENT specialists, surgeons, speech therapists, dentists/orthodontists and possibly psychologists.
For a cleft lip one or two surgeries will almost certainly be necessary, for a cleft palate it is likely that several procedures will be required in order to manage functional and cosmetic repair. Surgeries will generally begin at around three months, but ideally within the first twelve months; a great deal can be achieved very early on. For a cleft palate a bone graft may be necessary at around eight years old to support jaw and speech development and braces; plastic surgery is generally carried out during adolescence to complete the treatment.
Sadly, the answer is that we don’t know. Genetic links have been identified in some cases, but research is ongoing on this subject.
In the meantime, research does suggest there may be some contributing factors, such as:
But these are only considered likely connections and this is not an exhaustive list.
The Cleft Lip and Palate Association (CLAPA)
EmbryoCare Future Family Insurance is a unique policy that provides expectant mothers with added assurance from the 20 week scan* through to their child's second birthday. EmbryoCare aims to ease the financial impact of unforeseen costs that can result from 14 covered conditions - including Cleft Palate and Cleft Lip.
*EmbryoCare's policy can be accessed following a clear 20 week scan from £16 a month.
EmbryoCare is a Trading Name of Future Family Limited. Future Family Limited (Company Number 07828098) is an Appointed Representative of Pulse Insurance Limited. Pulse Insurance Limited (Firm Reference No. 308626) is authorised and regulated by the Financial Conduct Authority.
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