Cleft repair operations

Yes, during a cleft repair operation, your baby will be put to sleep using general anaesthetic.

At least one parent or carer will usually be able to go into the anaesthetic room with the baby and stay until they are asleep. This usually involves them breathing in some gas.

Once they are fully asleep, a tube will be passed into their airway to help with their breathing. A cannula (a thin tube) will be put into a vein, often in the foot, and this will give fluids and medicine to your baby during and after the operation if necessary.

For pain relief, your baby will usually be given regular Ibuprofen, Paracetamol and possibly Morphine, either through a drip or as a liquid by mouth.

The ward staff will usually give you some pain relief to take home and will advise on its use. They usually recommend you give regular pain relief for one to two weeks after discharge.

Talk to the ward staff if you have any concerns about pain relief, both at the hospital and afterwards at home. Every baby’s needs are different and it’s important that you follow any specific advice that has been given to you by your medical team.

The operation and recovery period can be exhausting for you as well, so you might find it helpful to note down the times and doses of any medication you give your baby, as it can be easy to lose track.

Infections after an operation like this are rare but look out for warning signs including a raised temperature and loss of appetite. If you suspect anything, call the ward, your GP, or NHS 111 for advice.

There are several different methods used by cleft surgeons across the UK, so the specific details of your child’s operation may vary. You may hear things from other parents and carers which are different to what your surgical team have told you, but this is not something to worry about.

The surgeons working in NHS Cleft Teams are cleft specialists and perform cleft repair operations on many babies just like yours every year. A surgeon may prefer one technique over another, but this does not mean that technique is ‘better’, just that it works best for them.

Wherever you are in the UK, you can rest assured that your baby is in very good hands.

If you have any questions or concerns at all about your baby’s operation, do not hesitate to talk to your Cleft Team. They want you to feel comfortable with every step of your baby’s operation.

There are risks during every operation, but with the team of experts looking after your baby this risk is very small and carefully managed every step in the way.

Talk with your Cleft Team if you have any concerns.

The items on this packing list have been suggested by parents whose children have gone through at least one cleft repair operation themselves. If you have your own ideas or suggestions, get in touch.

• Blanket – it may help your baby to relax if they have a familiar smell.
• Favourite toys.
• Pram – whizzing them around the ward is a great way to distract them before the operation, especially if they’re getting hungry.
• Comfortable, front-fastening outfits, and a selection of bibs. Remember that any clothes may get stained from dribbling after surgery, so it’s best not to bring anything too new or precious.
• Babygrows or onesies with no feet – there may be a cannula or monitor on your baby’s foot (check with your surgical team), and this way you won’t have to keep undressing them.
• Pyjama Fairies make free wrap pyjamas and surgical gowns specially designed for children who are having surgery, designed in such a way that your child can remain fully dressed when the medical team need to examine their abdomen, complete observations and administer medication.
• Your changing bag and mat, including lots of wipes and nappies!
• Bottles and teats and any other feeding equipment (like thermometers and bottle cleaning brushes)
• If you are formula feeding, bring your chosen formula milk in unopened cartons, tins or cans. If you are breastfeeding or expressing, talk to the team about the best way to do this.
• Steriliser microwave bags (there is a microwave for sterilising anything and the bags work well).
• Mittens or socks for your baby’s hands to stop them from putting their fingers in their mouths. Bring around 4 pairs as they get messy and you need to keep all germs away from the upper lip.

The items on this packing list have been suggested by parents whose children have gone through at least one cleft repair operation themselves. If you have your own ideas or suggestions, get in touch.

• Three days’ worth of clothes, toiletries, etc. Thin layers are best, as it can be very warm in hospitals.
• Books and magazines to keep you busy. Adult colouring books (and colouring pencils!) can be a great way to distract yourself if you feel especially anxious.
• Sleeping mask, ear plugs and a pillow to make sure you get a good nights’ sleep.
• Towel and toiletries
• Phone charger (and other chargers as necessary!)
• Your own mug – a travel mug works well if you’re visiting the cafeteria for drinks
• Flip flops for during the night and the shower
• Dressing gown for during the night when you get up to feed, get a nurse, etc.
• Favourite snacks or treats. You might not feel like eating a full meal, but it’s important to keep your energy up.
• Copies of your admission letter – this will give you details on timings, information on the ward, and any other special instructions.
• A notepad and pen to jot down any instructions you receive or questions you think of. You may not get much sleep, so it’s good to write things down!

You will usually get to talk to your baby’s surgeon when you come in on the day of the operation and again afterwards.

The team does a ward round each morning and evening, and there will usually be members of the surgical team around in case you have questions.

One of the Cleft Nurses will try to visit your child on the ward after their operation. If this is not possible, one of the team will visit the next day, though usually not over the weekend.

There will usually be several babies having a cleft repair operation on the same day. Hospitals usually organise the operations in order of age, with the youngest baby going first.

The team will do their best to minimise how much time you and your baby will have to wait before going in for your operation. They will be able to give you the best estimate of waiting times on the day of your baby’s operation.

Occasionally, there may be delays for events or emergencies outside of the hospital’s control.

At least one parent or carer can usually go to the anaesthetic room, but you will be asked to leave as soon as your baby is under anaesthetic.

The exact time you will be away from your baby depends on the specific operation, and the team will be able to tell you more about this in the pre-surgical clinic.

Remember that if you are told the operation will take a certain amount of time, your baby might be ‘away’ from you for longer than this. This is because extra time is needed before and after the operation for preparation and recovery.

You will be called in to see your baby as soon as they are ready. Some babies will wake up more slowly than others. The nurses might ask you to take a bottle of milk or water with you to give them.

You need to be at your best for when your baby wakes up, so do whatever you can to look after yourself during what can be a nerve-wracking time.

It can help to leave the hospital to get some fresh air (make sure to inform the ward staff and provide your phone number!), or to do something that will help to focus your attention elsewhere, like watching a movie or TV show on a phone or tablet. Some parents recommend adult colouring books as a ‘mindless’ distraction to help pass the time.

You may want to call a friend, family member or even a Parent Supporter during this time if you’re feeling especially anxious. You may also find it helpful to post in our Facebook Parents & Carers Support Group, as there are many others there who have been in your shoes before and can offer support and good wishes at all hours.

This will depend on the surgery your child is having. Most children stay in hospital for one or two nights, but some may be well enough to leave the same day.

Once they are eating and drinking well and the ward and medical team are happy, your child will be discharged and sent home.

Usually only one parent or carer can stay on the ward.

If you contact Parent Accommodation at the hospital, they will be able to give you a list of nearby accommodation options.

Ronald McDonald House also provides free accommodation to families in need near several major children’s hospitals.

Every hospital is different, so it’s best to check any specific information they give you and ask if you have any questions.

Parents and carers usually have a pull-out chair bed if they are in one of the main wards or a fold-up bed if their child is in a cubicle. There is usually a bathroom with a shower which you can use.

Wards usually have a kitchen for parents to make tea, coffee and other drinks but the wards do not provide food for parents or carers.

Typical hospital policy is that you can only bring in unopened cartons, bottles or tins of your child’s formula. If you bring a tin of formula powder, you can give it to one of the nurses on the ward and they will send it to the Milk Kitchen to be made up for you.

The hospital website should have comprehensive information to help you prepare for your hospital stay.

You could also ask in our Parents and Carers Support Group on Facebook to see if others who’ve gone through a cleft repair surgery at the same hospital can answer any questions.

Your baby will look quite different after their operation, especially if their cleft lip was larger. It’s important to prepare yourself for this as best you can and to seek support.

Your baby may bleed from their mouth a little, and you will likely see some stitches, swelling, bruising, and dried blood on their lip. There may be some little dimples around the nose from hidden stitches; these will disappear as the swelling goes down. Sometimes, a small piece of foam is used to help hold their nose in its new shape. They may need to have splints on their arms to stop them from touching the stitches as they heal.

Many parents and carers say they miss their baby’s ‘first’ smile and that it took them a while to get used to how their baby looked after their lip repair operation. You may want to look through our photo gallery to see how other babies with similar clefts looked after their operation, and later on when they recovered. You may also like to read stories from other parents and carers or make use of CLAPA’s support services.

Top tips from other parents on coping with this change include:

• Take lots of photos and videos before the surgery so you’ll always remember how they looked
• Look into your baby’s eyes, because they stay the same
• Remember that you get to fall in love with two smiles

Some babies will feed after their operation without too much trouble; others will take longer to settle back into a comfortable feeding routine.

Generally, the surgical team will be happy for you to start feeding as soon as your baby is awake after their operation. This may be uncomfortable for your baby at first, and it may be especially difficult if their lips are still numb.

If you use formula milk, talk to your Cleft Nurse Specialist about what to bring to the ward. Typically, you can only bring in unopened cartons, bottles or tins of formula, and these will be made up by nurses in the Milk Kitchen.

You will not be discharged from the hospital until the team are confident that your baby will be able to feed well at home, so rest assured that you will be supported by the team through any feeding difficulties you have after your baby’s operation.

A visible scar will be left after a cleft lip repair operation and it may appear red, swollen and bruised after surgery, but this will fade considerably with time.

The swelling may take a few weeks to settle, and the scar may get thick, lumpy, and even start to pull the lip back up as it shrinks in the first few months.

Some parents have even said that, as their baby’s scar healed, it pulled the lip up so much it was almost like they had a cleft again, but that it eventually dropped back down.

This is all perfectly normal and is part of how a scar heals. It can take years for the scar to ‘settle’ into its final appearance.

It is important to keep the scar clean and free from scabs, as this helps with the removal of stitches. You will be shown how to keep your baby’s lip clean before you go home from the hospital.

Generally, you are advised not to use a dummy/comforter for several weeks after surgery, and to try and stop your child from putting their fingers or toys into their mouth.

Your surgeon will give you expert advice on how to care for your child’s scar. Follow this advice closely and consult your team or your Cleft Nurse specialist if you have questions or concerns.

Sometimes stitches in the wound are dissolvable, and sometimes they will need to be removed. Either way, you will have to come back to the hospital for a follow-up appointment not long after the operation, and you will get information about this before you go home.

Some teams advise massaging a baby’s scar with special creams or oils once the wound has healed enough. There are several different options available, such as Bio Oil or Vitamin E.

Some parents may recommend products that they felt worked well for them, but in all cases you should check with your Cleft Team first and follow their advice.

What works for one child may not be appropriate for all, and some ‘essential oils’ may contain other ingredients that could be harmful.

If your baby already has a passport before their lip repair, you may need to get a new one with a new photo if you plan to travel.

The UK Passport Office has advised that whether or not a passport will be accepted depends on the reactions of the officials at different borders around the world, and if they can easily recognise your child based on their passport photo.

The general advice is that if the change to your baby’s appearance is ‘drastic’ and ‘unrecognisable’, you should get them a new passport.

You’re unlikely to have issues when taking internal flights or leaving the UK, but you could run into problems trying to enter your destination country.

If you have issues entering a foreign country with your baby’s passport, you will likely be pulled aside and given a chance to explain their different appearance. If your child has a visible scar matching the area of the cleft in the photo, and if you have photo records of them having their operation, you’re more likely to be allowed through, but you will always be taking a chance. It will usually be much simpler to get a new passport than risk being turned away at a border.

Anecdotally, many parents have told us they’ve had no issues travelling with a pre-surgery passport photo for years after the repair and have never had to produce ‘evidence’ of their child’s surgery at a border, but there is no guarantee.

Unfortunately, there are no separate procedures for updating a photo for a reason like this, so you will have to apply for a new passport for your baby in the usual way.

Some babies will feed after their operation without too much trouble, others will take longer to settle back into a comfortable feeding routine.

Generally, the surgical team will be happy for you to start feeding as soon as your baby is awake after their operation. This may be uncomfortable for your baby at first, and it may be especially difficult if their lips are still numb.

If you use formula milk, talk to your Cleft Nurse Specialist about what to bring to the ward. Typically, you can only bring in unopened cartons, bottles or tins of formula, and these will be made up by nurses in the Milk Kitchen.

You will not be discharged from the hospital until the team are confident that your baby will be able to feed well at home, so rest assured that you will be supported by the team through any feeding difficulties you have after your baby’s operation.

After a palate repair, your baby may be able to suck, so you may be able to move on to different methods of feeding. Even if your baby can suck, you may be advised to continue using special cleft bottles and teats while their palate is healing. Every child is different, so consult with your Cleft Nurse Specialist for help with this.

When it comes to solid foods, you will usually be advised to stick to ‘soft’ foods only for two to three weeks after surgery. The Cleft Team will give you more advice around this.

The advice around this will be different depending on your Cleft Team, your child’s age, cleft type, and other issues. Ask about this at your pre-admission appointment.