Cleft FAQ!

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In the beginning, it was difficult when people asked certain questions. I didn’t know the answers & there was so much unknown. Whilst there are still unknowns, it’s much easier to answer questions now that we’ve lived it for the past 10 months.

So here’s the most commonly asked questions about Isla’s cleft & more importantly, the answers!

What is a cleft lip/palate?
A cleft is where part of the baby’s face did not join together in very early pregnancy (6/7 weeks) and affects 1 in every 700 babies, which is around 1200 babies per year. Isla was born with a unilateral (one sided) complete cleft lip and palate with alveolar ridge. This means the cleft runs from her lip at the front of her mouth all the way through to the back of her palate, involving her gum as well. This graphic is really useful to see the different types, although there are also huge variations on this. Isla’s cleft was wide and her palate was very widely open, much more so than on this diagram.

 

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Image from Cleftopedia

What caused it?
In Isla’s case, we believe there is a genetic link. Around 85% of clefts are of unknown cause with the remaining 15% being linked to genetic conditions.  Isla is taking part in a research study (Cleft Collective) which is a long term project aiming to find out more about the causes and treatment pathways for cleft lip and palates.

It’s just cosmetic, isn’t it?
Absolutely not. Many people believe that after lip repair surgery, the baby is ‘fixed’ or  ‘better now’. However, for children born with a cleft lip and particularly where the palate is also involved, there are other considerations. It can also affect hearing, speech, jaw growth, teeth and most importantly, feeding.

 

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A very new Isla!

 

 

How does it impact on hearing?
Children born with a cleft palate are more likely to have structural differences in their Eustachian tube and the muscles may not function as well. This can impact on their hearing as sound can become impaired as it travels through the middle ear. There are various options for improving hearing including grommets and hearing aids.
Isla has had a hearing loss since birth (I wrote about that here) and will be monitored until she is at least 18 years old, regardless of how her hearing is in future.

 

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Isla with her bone conduction hearing aid

Why does she need speech therapy?
At 10 months old, Isla has already seen the cleft team’s specialist speech and language therapist three times. Even though her palate has been repaired, Isla still has no suction and needs to learn to use and train the muscles underneath. She can only make one sound at present, although is trying very hard to make others. We have activities that we carry out with her at home every day to encourage her to use her palate and make new sounds. Isla’s hearing can also impact on her speech and this is why we decided to try a hearing aid from an early age.
Cleftline has an extremely good and detailed explanation of how cleft palates can impact speech on their website for anyone wanting to know more.

Why can’t she breastfeed/have a normal bottle?
When babies suck, they use their palate. As Isla’s cleft was very wide, she was completely unable to form any suction. We did try but she was physically unable to. Alongside her NG tube, Isla has tried a few different specialist bottles. We started off with a MAM squezy bottle where we would fill the teat with milk and then squeeze the bottle by hand whilst Isla was feeding so that the milk would just flow into her mouth. However, she found this quite difficult to control and it also increased her reflux symptoms so we looked at more baby-led options. She has been using a Dr Brown’s Speciality Feeding bottle since she was about 2 months old. This oottle allows her to clamp down on the teat with her gums and control the milk flow herself as the special blue valve keeps the milk from going back into the bottle from the teat.

 

 

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Isla’s specialist bottles

Can she use normal bottles now her palate has been repaired?
At the moment, no. Isla still has no suction. She also finds feeding from her specialist bottles tricky at times. But recovery from her palate surgery has been difficult for her so we hope that as she grows and gains suction, she will eventually be able to use a normal sippy cup.

 

What’s the tube for?
Isla has had a nasogastric (NG) tube twice; once from birth until she could manage full bottle feeds and now after palate repair. Both times her tube has been used alongside her bottle feeds as the aim is that she will take all of her feeds orally. The tube is inserted into her nostril and passed down into her stomach (keeping it there is a whole other post!!) Her feeds are then given through the tube when she doesn’t take her feeds orally.

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Leave a comment or let me know if there are any other questions I can answer!

 

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