Cleft and COVID-19

On this page, we’ll be publishing any information we receive about special measures people born with a cleft or associated conditions may need to take during the COVID-19 outbreak. We’ll continue to update this page as we receive updates from health professionals. If you have a question which isn’t answered here, please get in touch at [email protected] and we’ll do our best to get answers.

Questions:

Does a cleft make someone more likely to catch the coronavirus?

A cleft by itself, even an unrepaired cleft, does not make someone more likely to catch the virus which causes COVID-19.

Some people born with a cleft may not be able to close their mouths all the way, or may naturally breathe through their mouth instead of their nose. Some people may have reduced palate function, or other functional issues with their mouth and nose. These issues do not put someone at a higher risk of catching the virus, as the nose doesn’t filter out the virus.

Everyone should follow the NHS advice to reduce the spread of the coronavirus, but being born with a cleft does not make you more likely to catch it.

Does a cleft put someone at a higher risk from COVID-19?

There is not enough evidence for us to know for sure. Right now, there’s nothing to suggest children born with a cleft (with no other health issues) would be at higher risk from the virus, but this may change as we learn more.

Sometimes a cleft occurs as part of a syndrome, and this syndrome may affect other parts of the body (like the heart, lungs or kidneys) which could increase someone’s risk from COVID-19. There are many different syndromes related to cleft, so we can’t say for sure at the moment which ones (if any) may pose a higher risk.

Someone may also have another health condition unrelated to their cleft which puts them at a higher risk, such as diabetes.

If you have any concerns about how COVID-19 may affect you or your child because of another condition or syndrome, get in touch with the health professionals who usually help you manage this condition. In some cases, this will be the Cleft Team.

We advise everyone to follow published NHS advice to limit the spread of the virus and deal with any symptoms, and for anyone with particular concerns to contact their Cleft Team or call 111.

Do associated conditions and syndromes put a child at higher risk?

There are a large number of conditions and syndromes where a cleft (usually cleft palate) is a symptom. Some of these are extremely rare. Two of the most common are Pierre Robin Sequence (PRS) and Stickler’s Syndrome.

There is no straightforward answer to the question of any of these conditions and syndromes increasing someone’s risk when it comes to COVID-19, as it depends on how the existing condition affects overall health as well as particular parts of the body.

There is also very little evidence about how this affects individuals with specific conditions, so all of this is based on the ‘best guess’ of health professionals.

If you have specific concerns about your child, please speak to a medical professional who knows them well, such as your paediatrician.

For Pierre Robin Sequence, the way it affects each child will be very different. Some children have minor issues with airways which can be managed by having them sleep on their side. Some children need more involved treatment such as an NPA (breathing tube which runs through the nose). Children who need more regular, ongoing treatment may be at higher risk depending on how severe these breathing problems are, but those who don’t currently need this kind of treatment are unlikely to be at higher risk.

Many children with PRS have additional medical issues, and this is especially likely if they need more involved treatment like an NGT or NPA. In general, it’s more likely any increased risk would come from these additional issues, not the PRS itself.

Some families may have received letters indicating their child is at a higher risk from COVID-19, but the reasons for this will be particular to that child, and are likely to be because of other ongoing health issues.

Although Stickler’s Syndrome can cause heart issues, this is rarely a concern when these children are young, and in general they do well throughout childhood.

If a child is generally fit and healthy and parents and carers do not worry about airway problems day-to-day, it’s likely the risk is no higher than any other child with an isolated cleft palate, which is thought to be the same as the general population.

What effect will delaying cleft lip and/or palate repair surgery have on my child?

We know right now many of you are concerned about what impact delaying your child’s surgery will have. Cleft Teams have advised that, in general, any delay of a few months is unlikely to affect your child’s longer-term outcomes.

There is ongoing research about the best time to conduct cleft lip and cleft palate repair surgeries. In the UK, the national standard is 3-6 months for cleft lip repair, and 6-12 months for cleft palate repair, but many other countries have different timings.

These timings are chosen for a number of reasons, including fast healing and the fact that babies will be too young to remember any surgeries. A baby being older when surgery is performed will change things, but these are not necessarily negative changes. For example, an older baby will be bigger and therefore easier to operate on; there will be more tissue to work with, and this tissue will be less delicate. If they have already moved on with their feeding it may be easier to use a cup than a bottle after surgery.

Generally speaking, cleft lip repair can be done at any age with good outcomes. In developing countries, older children and adults have cleft lip repair surgery with good outcomes.

Cleft palate repair is more time-sensitive, as it may affect speech. However, research is ongoing to work out when the best time to operate is, as there’s no clear evidence that 6 months is better than 12 months, and in many other countries the standard time for palate repair is 12-18 months.

Once Cleft Teams are able to perform cleft surgery again, they will be in contact with patients and families to let them know the next steps. There will be a backlog of babies, children and adults surgery, and Cleft Teams will have to carefully prioritise each patient. The situation is developing day by day, so Cleft Teams won’t be able to say at this time how this might work in the future. When more information is available, we’ll be sure to share it with you.

We don’t know how long this situation will last for, but your Cleft Team are still around to support you in any way they can, as are CLAPA’s support services. In whatever happens over the next few months and beyond, you won’t be alone.

Cleft Teams in the UK and Ireland have put together this message, outlining what delays to surgeries mean for cleft patients and their parents or carers. Please click the button below to learn more.

Message from UK and Ireland Cleft Teams

If you have particular concerns about your child’s surgery being delayed, please call your Cleft Team. They know your child’s medical needs best, and will be able to give you clearer answers.

If you are feeling anxious about this delay in treatment and would like to talk things through with another parent or adult, please do make use of our Peer & Parent Support Service.

What effect will delaying other kinds of surgeries have?

This will depend very much on the reason for the surgery, and the particular circumstances of the patient. If you have particular concerns about a surgery being delayed, please call your Cleft Team.

For Alveolar Bone Graft surgery, there is a reasonably long ‘window of opportunity’ during which this can be performed, so the most important thing to keep in mind at this time is keeping up the care of any orthodontic appliances (see below).

How should I care for any orthodontic appliances (e.g. braces) at this time?

Some patients will be undergoing orthodontic treatment, possibly in preparation for a surgery like an alveolar bone graft.

Most orthodontic appliances can be left as they are for some months without issues as long as the usual aftercare instructions are followed. These are:

  1. Maintaining excellent oral hygiene. Brush 3 times a day with a standard toothbrush, followed by an interdental brush. Use a fluoride mouthwash once a day.
  2. Low sugar diet. Where possible, avoid all snacking on sugars and drinks with added sugar. Avoid fizzy drinks in particular.
  3. Avoid hard or sticky food that could break the brace wire or brackets off a tooth.

If you have an orthodontic emergency, please call the Cleft Team in the first instance so they can provide advice on how you can manage this at home. Do not visit the hospital unless specifically advised to do so by a healthcare professional.

If you have any concerns relating to braces and orthodontic care, the British Orthodontic Society has put together a section on their website, full of self-help advice for patients with braces, as well as video clips and Youtube links. You can visit their website here.

How can I support my child’s speech development at this time?

Although remote speech and language therapy sessions are no substitute for in-person appointments, the Speech and Language Therapists with your Cleft Team are still available to give support and advice to families at this time. If your child was having SLT before the lockdown, you should have received a letter or email to let you know about any new arrangements and resources. If you have any questions or concerns, please do contact your Cleft Team.

Our website also has a number of resources and ideas to help support early speech development.

My cleft affects my breathing, should I still wear a face covering?

The advice from the World Health Organisation, the NHS and the government is to wear a mask when in public to help reduce community transmission of the coronavirus.

We have heard from a number of adults in our community that they find wearing masks uncomfortable, as due to their cleft they may have structural issues with their nose and mouth which affect their breathing.

Wearing a mask can feel unpleasant for everyone; they’re hot, particularly in the summer, and it can feel like it is more difficult to breathe. This is the case for people without a cleft as well. It may be that breathing feels different when wearing a mask, and if you already have breathing concerns  this could cause panic which will make any issues worse. However, just because it can feel more difficult to breathe normally when wearing a mask, this does not necessarily mean wearing the mask is doing you any harm.

It’s a good idea to try out a few different styles of masks until you find one which is more comfortable to wear. You may consider a mask designed for aerobic sports, where high oxygen intake is important, as this will feel more comfortable than one of the more readily available cloth masks. It may also feel easier to breathe through your mouth while wearing a mask.

There are exceptions to the mandatory mask rule for those with breathing problems, but we would urge everyone to try out a few different masks and getting in touch with your Cleft Team for advice before asking your GP for exemptions. If your cleft affects your breathing in your significant way, your Cleft Team will be able to provide advice and, where appropriate, treatment. It’s important to balance the risks and benefits of any measure like this, and in the case of mask-wearing, the short-term discomfort may not be pleasant, but it is much better than catching the coronavirus, or contributing to its spread in your community.

As always, if you feel you are vulnerable, or have an underlying condition such as asthma, you should continue to follow medical advice to minimise your exposure, and get in touch with your GP or other medical team should you have any specific questions around managing this.

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