Preparation for primary cleft palate 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 and 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 as well. 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, 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 baby sleepy.

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

As a rough guideline your child will be away from the ward for about 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, 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.

Your child may look slightly puffy and swollen around the nose and eyes. This is normal; it should reduce in a few days.

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.

A nasogastric (NG) tube may have been inserted down one nostril to enable medicines to be given regularly to keep your child comfortable. The medicines paracetamol, ibuprofen and oramorph will continue until your baby has fully recovered. You will need to have paracetamol and ibuprofen at home.

A nasopharyngeal airway (NPA) may have been inserted. This is a tube which goes into a nostril and is stitched in. It is like a little trumpet which allows breathing to take place more easily while the swelling of surgery settles. It will usually need to be in for 48 hours or a little longer. The tube will need to be kept clear by the nurse regularly passing a small tube down the centre. Your child should not be able to feel this. Nebulisers or humidified oxygen to moisten the air may also be used.

On return to the ward your child will continue to be monitored. Your child’s oxygen levels will be checked using an oximeter placed on a finger or toe. The oximeter measures the oxygen in your child’s blood and helps doctors and nurses to assess your child’s breathing. Sometimes this monitoring can be better achieved in the children’s intensive care unit.

It is normal for children who have undergone this type of surgery to experience some 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.

If your child has had grommets inserted in the ear there may be some slight bleeding or discharge from the ear.

For babies: Sometimes babies find their normal teats uncomfortable and milk may then be given from a spoon or cup for a short period. After the palate repair your baby may find taking solids easier than milk. You can mix their milk into their solids. 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. It is advised to avoid the use of a dummy for three weeks after the operation as they can prevent the palate from healing well.

After the operation, your child’s palate and back of the throat will be tender and liable to damage by hard or spiky foods. For this reason it is advised that you feed your child a soft diet for three weeks post surgery. Your child should be given water after all medications and foods to cleanse the stitch line inside the mouth. This should continue for three weeks after the operation.

Continue to keep hard toys and objects from damaging the palate for three weeks after surgery.

Cleaning your child’s teeth should start on the day following surgery, gently using a soft toothbrush with children’s toothpaste. Caution should be taken when cleaning the back teeth so as not to damage the repaired palate. It is normal for their breath to smell a little and this should resolve with good oral hygiene.

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 and fluid (usually around 50% of their normal daily intake - they may only get back to their normal feeding pattern a week or so after surgery) and minimal pain relief.

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 newly repaired palate. Feeding may take some time to get back to normal. A soft diet should be offered for three weeks aufter surgery. 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 inside the mouth (on the palate) will dissolve by themselves in approximately three weeks and therefore do not need to be removed. They can take up to six weeks to fully dissolve.

Grommets information

You must keep your child’s ears dry for six weeks after the grommet insertion. When bathing and washing your child’s hair, please put some Vaseline on some cotton wool and put into their ear. They cannot go swimming for six weeks.

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 palate healing nicely.
• Keep hard toys and objects out of reach to prevent damaging the palate for three weeks after surgery.
• Your child can return to nursery or school after about two weeks; this varies from child to child.

Outpatients follow-up

The cleft speech and language therapy team will contact you to arrange an appointment around six to eight weeks after your child’s surgery. This will give you an opportunity to ask any questions you may have regarding speech.

A follow up appointment with the surgeon and the rest of the cleft team will usually take place around 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.

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 or 01223 596092 (24 hour answer machine) or staff on ward D2 at any time 01223 217250.