Cleft and COVID-19

On this page, we’ll be answering your most commonly asked questions about cleft and COVID-19.

If you have a question that isn’t answered here, please get in touch at [email protected] and we’ll do our best to get answers.

Our friends at Changing Faces have also put together a helpful resource page for people with a visible difference.

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, but right now, there’s nothing to suggest people born with a cleft (with no other health issues) would be at higher risk from the virus.

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 (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.

Is the lateral flow (swab) test for coronavirus dangerous if I have a cleft?

The lateral flow test (which involves a nasal and throat swab) for coronavirus may be uncomfortable, but it will not do any harm. It is advised to avoid swabs within 2 weeks of surgery to avoid disrupting healing tissues, but once the surgical site is healed, there should be no issues preventing someone from taking the test.

If your cleft affects the shape of your nose (such as blocking one nostril) or you have a fistula, it’s a good idea to make the person administering the test aware of this so they can work around it, but this by itself should not prevent them from administering the test or getting a good sample. This is the case for adults as well as children.

If you have any concerns about this, please get in touch with your Cleft Team.

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, people routinely have cleft lip repair surgery much later than in the UK 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.

There is currently a backlog of cases around the UK, so surgery may be delayed in some areas. Surgery for adults has been particularly badly affected.

There are several reasons for the backlog of cases. For one, there are stricter protocols in place to stop the spread of COVID-19, meaning it takes longer than usual to prepare for each surgery. Another is that there are record numbers of patients on surgery waiting lists for all sorts of conditions and concerns, so it’s harder for Cleft Teams to get the time they need in surgical theatres.

At this time, hospitals and Cleft Teams are having to make difficult decisions about prioritising patients with the most urgent needs. They should be able to give you a timeframe of when you can expect a surgery date and will tell you as soon as possible if there are any changes.

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 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?

The Speech and Language Therapy Team will have made arrangements for any ongoing treatment. This may include remote or in-person appointments depending on your location and what kind of treatment is needed. If you have any questions or concerns, please 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 short answer is that everyone who is able to wear a mask should do so as per the government guidelines, and those who find it particularly uncomfortable should try different mask options before considering going without a mask and potentially contributing to the spread 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 mask mandates for those with breathing problems, but we would urge everyone to try out a few different masks and get in touch with the Cleft Team for advice before considering going without a mask. If your cleft affects your breathing in a 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 teams should you have any specific questions around managing this.

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