This page contains stories from other parents and answers to frequently asked questions about the time you’ll be at the hospital. Every hospital is different, and every Cleft Team has their own policies and procedures. As always, this information is intended as a general guide only.
“The youngest baby has their operation first and the oldest baby has their operation last. A few days before the operation you are informed by the cleft co-ordinator about the approximate timings of the operation, where your baby is on the list for their operation (which can change on the day) and when you are allowed to give your baby their last milk feed. Most parents want their baby to be first on the list; less anxious waiting around and time for the baby to get agitated, hungry and bored.
[Our son] Rafe was second on the operating list; I was so gutted when I found out that the baby who was first on the list was only one day younger. It is tough for parents to be second or third on the list; the more time you are waiting at the hospital the more nervous and apprehensive you get about the operation. It is really arduous for the babies; they have to contend with hunger, tiredness and being in an unfamiliar environment. All the cleft babies and their parents are on the same ward. It is sad to witness the parents of the baby who has their operation first get increasingly worried and concerned, knowing that you will also have to endure it soon.
We were informed that Rafe’s operation would be at approximately 11.30am, but we ended up having to wait until 1pm for his turn to come. I had never appreciated how slowly minutes could tick by when you so desperately want something to be over and done with. As the time slowly moved forwards I felt more worried and apprehensive waiting for Rafe’s turn to finally arrive. I must have done about one hundred laps of the long hospital corridor with Rafe in his pram; trying to keep him asleep and to focus my mind away from the operation.”
– Katie J, South London
What should I bring with me?
See our packing list for the hospital.
Will we get to talk to our surgeon before and after the operation?
Yes, the surgeons work as a team with the rest of the unit. You will meet some of the team in the clinic at the pre-operative assessment. You will also see them when you come in on the day of surgery and again after the operation. 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.
Will our Cleft Nurse Specialist be around?
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 not over the weekend.
Can I take my child away from the ward while they are staying?
Yes, it is usually possible to take your child off ward, but you will need to check with the ward staff first. They will probably ask for your mobile phone number in case they need to call you back to the ward for any reason.
How long will I have to wait?
The hospitals do their best to minimise how much time children wait before going to theatre. The surgical team on the day will be able to give you the best estimate. Occasionally there are delays for events or emergencies outside the hospital’s control.
How long will I be away from my child?
Both parents are able to go to the anaesthetic room but you will be asked to leave as soon as your child is under anaesthetic.
This varies depending on the specific operation and the team will be able to give you an answer to this in the clinic when explaining about the operation. The time away from the parents is always longer than the actual operating time, and is usually between 2-4 hours.
The recovery nurses call parents down as soon as their child is ready. This can vary between different children, as some children wake up more slowly than others. The recovery nurses may ask you to take a bottle of formula or water down with you.
What should I do while my child is in surgery?
In general, the advice is to distract yourself as best you can. It can help to leave the hospital (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.
“We were told that the operation would take about two and a half hours, so we left the hospital and headed outside. It really helped to kill the wait to have a change of scene and get some fresh air. We took an hour and a half away from the hospital and re-energised getting ready to comfort our baby after his operation.”
– Katie J, South London
How long will my child have to stay in hospital?
This will depend on the surgery your child is having. Most children stay in hospital for one or two nights. Once they are eating and drinking well and the ward and medical team are happy, your child will be discharged and sent home.
What pain relief will my child have?
This varies according to the operation and also whether there are any medicines that your child cannot take. Usually there will be regular Ibuprofen, Paracetamol and possibly Morphine, either through a drip or as a liquid by mouth. Talk to the ward staff if you have any concerns about pain relief, both at the hospital and afterwards at home.
What are the visiting hours?
Parents can visit any time, but most hospitals prefer other visitors (including your other children) to visit between 10am and 8pm. Check with the ward for specific times.
Can both parents stay? If not what accommodation or hotels nearby are available?
Usually only one parent is able to stay with your child on the ward. If you contact Parent Accommodation at the hospital, they will be able to give you a list of nearby accommodation options.
How will our child look after the lip repair?
The surgical team will explain this to you in clinic. There will usually be some swelling of the lip, nose and cheeks. There may also be some little dimples around the nose from hidden stitches (these dimples disappear as the swelling goes). There may be a little bit of blood in the nostril or on the lip at first.
For examples, check out our Photo Gallery of babies before and after surgery.
Published: November 2015
Next Review: February 2017
Source(s): Range of literature from Cleft Units, particularly Birmingham Children’s Hospital, as well as information produced by the Royal College of Surgeons in association with CLAPA. Stories and suggestions from parents of children born with a cleft were also used.
If you have a comment or question about the information in this page, or would like to know more about the sources of this information, please contact Communications & Information Manager Anna Martindale at [email protected] or 020 7833 4883.