Preparation for primary cleft lip surgery

This information is intended to help prepare you and your child for their operation.

Pre-operative advice

Before surgery

As your child's operation approaches, we will begin to finalise preparations and plans. We will do this by asking you to attend a series of appointments, all of which are very important.

A couple of months before your child's operation, you will be required to attend a cleft multidisciplinary clinic. This is similar to the clinic you will have attended when you first met the team. The surgeon will review your child’s progress, weight gain and general health. The surgeon will then complete a consent form with you after discussing the details of the procedure. Please keep this document safe. It is important that you bring the consent form with you to your child’s pre-admission clinic appointment and on the day of surgery.

Around four to six weeks before your child’s operation, a cleft clinical nurse specialist (CNS) will visit you at home to discuss the upcoming admission. You will be given lots of information during this visit, both verbal and written. The aim of this pre-admission home visit is to help you and your child feel as prepared for the upcoming operation, so it is a good opportunity to ask any questions you may have. The CNS will also discuss accommodation requirements with you and will take consent for medical photography. Please keep this document safe.

Finally, you will be required to attend a pre-admission appointment on Ward F3 a few weeks before your child’s operation. The aim of pre-admission is to perform medical and nursing checks to ensure your child is fit for surgery and also to complete any important pre-operative tests (where applicable). Please ensure that you bring along the medical photography consent form to this appointment as your child will need to have their pictures taken for their records.

As your child’s mouth will need to be opened wide during the surgery, moisturising may help keep the skin softer, more supple and will reduce soreness and cracking. Two weeks or more before the operation, start applying Vaseline® to the corners of the mouth twice a day.

After the operation your child will need to be given cooled, boiled water after all medications and feeds to cleanse the stitch line inside the mouth. For babies, it would be beneficial to get them used to the taste of water by giving a small amount (around two to four teaspoons) either by spoon or bottle after feeds. Do not worry if your baby/ child dislikes water as it is not necessary for it to be swallowed. This will continue for three weeks after the operation.

On admission to the Children’s Ward

A named nurse will be allocated to look after your child and will ask you about your child’s routine at home, and also discuss with you what will happen before and after surgery.

One parent can stay overnight on a pull down bed next to your child and all linen is provided. There is alternative accommodation available onsite called Elsworth House. This can be provided to a second parent/ carer and if required an accompanied sibling also. This will have been discussed with your cleft CNS at the pre-admission home visit.

The ward has a fridge, freezer and microwave which you can use for yourself and your child during your stay. Please ensure all food items are clearly labelled with your name and the date.

Family and friends are welcome to visit the ward at any time during the day. Visitors who are unwell are advised to not visit the ward until their symptoms have fully resolved. Please be aware that the ward may be unable to accommodate siblings/ visitors under the age of 12 years.

For babies, please bring their usual teats, bottles, milk, nappies, and their favourite toy with you for the duration of your stay. For children, please bring any favourite toys etc they may have.

On the day of the operation

You will be able to give feeds until 02:00 for milk/foods, 04:00 for breast milk and 06:00 for clear fluids, such as water. After seeing the anaesthetist, they will specify any additional feeds before going to theatre.

The anaesthetist will introduce themself to you on the day of surgery. They will confirm that your child is fit for surgery and explain the care of your child for the rest of the day.

Occasionally, a pre-medication may be given one hour before your child goes to theatre. This medicine dries up the inside of the mouth and your child may appear a little flushed looking. It could also make your child sleepy.

You will be able to accompany your child to theatre and both parents will be allowed to stay in the anaesthetic room until they are asleep. Your anaesthetist and nurse will discuss this with you.

As a rough guide, your child could be away from the ward for around three to six hours. This can be a difficult time for parents. Sometimes it helps to have something planned to keep you occupied such as going for a walk, a phone call, a cup of tea or coffee; whatever is right for you. The recovery staff will be able to give you a bleep which works within the hospital building. When your child is awake you will be bleeped and then both parents are allowed to go to the recovery room. You may take a feed with you. If you leave the hospital during the surgery we ask that you provide up to date contact information and let the nursing staff know where you are going.

After the operation

When the operation is over your child will go to the recovery room. Recovery staff will contact you via the bleep provided so that you can be with your child. Whilst waking up your child may require some oxygen. If a baby, there may be a nasal stent in place which is held in by one stitch to support the nose during healing.

Your child may look slightly puffy and/or bruised around the nose and eyes. This is normal swelling, and should reduce in a few days. Surgical glue is used over the new wound which offers some protection. It has a blue colouring meaning it may bear resemblance to a bruise.

There will also be a drip in place, either in the foot or hand, which will be secured with a bandage. Your child may receive fluids through this drip until the following morning. This will remain in until your child is taking an adequate amount of fluid.

It is normal for children who have undergone this type of surgery to experience slight bleeding from their nose or mouth as this part of the body is so well supplied with blood vessels. Their voice may sound hoarse for a couple of days because of the tube that kept their airway open in surgery.

On return to the ward your child will be monitored while asleep on a machine called a pulse oximeter, which will be attached to the big toe or thumb with a plaster. It measures the oxygen in your baby’s blood and helps doctors and nurses to assess your baby’s breathing. You will still be able to pick up your baby or have a cuddle with your child.

Sometimes babies find their normal feeding teats uncomfortable and milk may then be given from a spoon or cup for a short period until the lip heals in a day or two.

Breastfed babies will be able to go back on the breast straight away. Ward C3 has a feeding room with breast pumps or the cleft team can loan you a portable breast pump to use whilst you are on the ward.

After the operation medicines will be given to keep your child comfortable. These will be given regularly either by mouth or by the drip.

Discharge

Your child will not be discharged from the ward until you, your nurse and the surgeon are happy that your child is doing well. Your child will need to be taking adequate amounts of milk/ food/ water (although they will only get back to their normal feeding pattern a week or so after surgery) and minimal pain relief medicine.

Post-operative advice

Following discharge

By the time of discharge you will be familiar with the specific care of your baby. We hope the following information will be a helpful reminder.

Feeding

By the time of discharge we will expect your baby to be drinking from the bottle or breast. Your child may need a little time to get used to their new lip. Feeding may take some time to get back to normal. After all medications and feeds your child should be given around two to four teaspoons of cooled, boiled water to cleanse the stitch line inside the mouth. This should continue for three weeks after the operation. If you have any concerns about your child’s feeding feel free to contact your cleft clinical nurse specialist.

Pain

You will need to have paracetamol and ibuprofen at home. Paracetamol relieves pain. Ibuprofen relieves pain and reduces swelling. For the first few days to a week at home give the pain medicines regularly. If your child does not appear to be in pain, slowly reduce the frequency that they are given or remove one of the pain medicines. If you are concerned that the pain medicines are not effective please contact the cleft team or your GP.

Stitches

The stitches on the lip will dissolve themselves in time and therefore do not need to be removed. There also may be knots inside the nose from the nose correction. They can take several weeks to fully dissolve.

Lip care

Before you leave hospital you will be shown by your nurse how to clean the lip area. Warmed boiled water and sterile gauze should be used. Gently dab the moistened gauze onto the lip area. Gently remove all the old blood. It is important to keep the wound clean. It can become infected if it is dirty. It is advisable to do this after you have given your child some pain medication.

Infection is rare; however it pays to know the signs. These include a red, hot, sore wound, raised temperature and loss of appetite. If your child has these signs contact your GP directly.

If teeth are present you should start cleaning your child’s teeth using a soft brush and children’s toothpaste. This can also help prevent infection.

Often the scar shortens and pulls upwards a few weeks after repair. This phase will pass and the lip will lengthen again as the scar matures. The scar may also feel lumpy. Direct sunlight can irritate a new scar. You must keep the scar protected from the sun until it is fully healed. Put on a high factor sun protection and make sure your child wears a hat.

Other information

• Your child may be a bit irritable for a few days following their surgery. They will settle down into their normal routine shortly.
• Dummies are not advised for three weeks after the operation as they may prevent the lip healing nicely.
• Keep hard toys and objects out of reach to prevent damaging the lip for three weeks after surgery.
• Your child can return to nursery or school after about two weeks but this varies from child to child.

Nasal stent removal

For babies: The nasal stent is held in place by a stitch. The removal of the nasal stent is undertaken in Clinic 7 on a Tuesday morning around one to two weeks after surgery. It is a quick and painless procedure where the nurse will cut the stitch holding the stent in place.

After removal of the stent, some photographs will need to be taken to complete the before and after surgery record.

You will be provided with a tube of Dermatix^® silicone gel which you can begin applying to the wound site three weeks after surgery. When you attend for stent removal the cleft clinical nurse specialist will show you how to apply the Dermatix.

Directions for using Dermatix silicone gel:

• Wash your hands.
• Apply a very small amount of Dermatix to the lip area four times a day. The Dermatix will appear as a shiny sheen on application and will have a dull matt appearance when dry.
• You should continue to use for three to six months after the surgery.

Outpatients follow-up

This is usually three to six months after your child’s operation. An appointment will be sent to you in the post. If this does not happen please contact the cleft co-ordinator on 01223 596092.

Advice and support

If you require further information on any aspect of your child’s care contact the cleft lip and palate team who are available Monday to Friday 08:00 to 16:00. Telephone: 01223 596272 (24-hour answer machine), Ward D2 on 01223 217250 or visit the regional cleft service (opens in a new tab).