Cleft lip repair surgery takes place when the baby is at least 3 months old. Cleft palate repair surgery usually happens between 6-12 months.
In the month leading up to surgery, you will attend a pre-admission appointment at the hospital where you can meet the ward team who will be looking after your baby. Your baby will also have a medical check-up and possibly a blood test. Photographs may also be taken. You may have the opportunity to talk to a doctor or the surgeon themselves to have the operation explained in more detail and discuss any worries you may have.
It’s a good idea to write down any questions you have before this appointment and to make notes throughout which you can refer to later.
You may want to ask…
- How long will my baby be in surgery for?
- How will I feed my baby directly after surgery and then once they’ve recovered?
- Why is my baby having his/her surgery now instead of sooner/later?
- Can I use a dummy/comforter after surgery?
- Who should I call if I need help or advice after surgery?
Talking to siblings
If you have other children, they might find the idea of their little brother or sister going to hospital quite scary, especially if you and/or your partner will be away for a night or two. If you are feeling especially nervous or anxious about the surgery, they may pick up on this and imagine the situation to be much worse than it is. Take time to sit down with any siblings and talk through what will happen and why it is necessary.
You may find a book like Callie and her Cleft helpful in this scenario.
Brothers and sisters can experience a wide range of emotions when their baby sibling is hospitalised, so it is important to give them space to talk through any worries they have and correct any misconceptions. It is also helpful if you can walk them through exactly what will happen to them while you are away – who will look after them, when you will call them, when you will come back, what will happen afterwards, etc.
If your baby is having a cleft lip repair, explain to their siblings that they will look different after surgery. CLAPA’s online gallery of before and after surgery photos can be helpful here.
Packing for Hospital
Each hospital is unique and has their own facilities and procedures, so it’s best to check on their website (or visit the ward in person) to get specific information and advice. You may also want to talk to one of our Parent Supporters whose child was treated at the same hospital.
What facilities are there for parents at hospitals?
Wards usually have a kitchen for parents to make tea, coffee and other drinks but the wards do not provide food for parents.
Parents 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 that the parents can use. Talk to the nurse in charge for more information.
What food/drink should we bring?
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.
If your child is having an operation on their palate they will need to have soft food for two to three weeks after the surgery. Your surgical team can give you more advice around this.
What should I bring for myself?
This list will change depending on how long you will be staying at the hospital. All of the items here have been suggested by parents whose children have gone through at least one repair surgery themselves. If you have your own ideas or suggestions, let us know in the comments.
- Three days’ worth of clothes, toiletries, etc. Thin layers are best, as it can be very warm in hospitals.
- Sleeping mask, ear plugs and a pillow to make sure you get a good nights’ sleep
- Books and magazines to keep you busy. Adult colouring books (and pencils!) can also be a great way to distract yourself if you feel especially anxious.
- 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 have to get up to feed, get a nurse, etc
- Jacket so you can escape outside
- Comfort food (if hospital doesn’t have a good selection)
- 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!
What should I bring for my baby?
- Blanket – it may help your baby to relax if they have a familiar smell
- Favourite toys
- Pram (to whizz them around the ward to try to distract them before the operation, especially if it’s later in the day when they’ll be getting hungry)
- Comfy outfits (it tends to be hot in hospitals). Front-fastening clothes are best. 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 nappies!
- Bottles and teats
- 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)
- Bottle cleaning brush
- Baby wipes
- Mittens or socks for 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.
Preparing your child
Operations can be postponed if a baby is unwell, so make sure to keep them away from others who have colds, flu or other infections in the lead-up to surgery. There can also be other medical issues which can cause an operation date to be pushed back, so make sure you’re prepared for this possibility.
The day before the operation, a member of the Cleft Team will usually call you to confirm what time you should arrive and the latest times at which your child should have food and drink.
There are usually multiple surgeries taking place in a day, with the youngest child being operated on first, so make sure you know where you are in the order, and be prepared to wait a while if you’re scheduled in for later in the day.
“My husband had given [our son] three big bottles of formula milk during the night and tried as much as possible to play with him and keep him from sleeping. Our plan was to get [him] to sleep as much as possible on the morning at the hospital while we waited for his operation. We were worried that he would otherwise get upset about being hungry and not being allowed to have his bottle. Thankfully our plan worked a treat as he was happy and content all morning; sleeping lots and playing. Not once did he start crying out for a bottle of milk. I was relieved that he seemed so relaxed and cheery being in the hospital. But, I felt a big pang of guilt every time he flashed his beautiful cleft smile at a passing nurse knowing that he would soon be on an operating table having an operation that would change his face forever.”
– Katie J, South London
Sending a child to surgery, especially a young baby, is difficult for any parent. It’s important to take time for yourself and to seek support from family and friends to help you through this time.
After cleft lip surgery, your baby will look different, and this can be especially difficult. Top tips from other parents 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
You may want to talk to one of our Parent Supporters about what you’re feeling, or you may want to join our Facebook Group for parents and carers, as they will know better than anyone what you’re going through.
Our Parent Stories can also help you to be prepared for what is to come.