Common questions about craniofacial surgery

Here is a list of the most common questions asked by parents

1. Why do we need to come to Birmingham?

You are being referred to Birmingham Children's Hospital because it is one of only four centres in the UK that are designated to specialise in the type of craniofacial treatment your doctor thinks your child might have.

The four centres are among the best in the world and all work to the same standards.

You are welcome to attend one of the other super-regional centres if you prefer. These are at:

  •    Radcliffe Infirmary, Oxford
  •    Great Ormond Street Hospital, London
  •    Royal Liverpool Children’s Hospital, Alder Hey

2. Can we have the preliminary tests done at our local hospital?

Unfortunately not, in most cases; a scan is best done at Birmingham Children's Hospital where the radiographer has a specialist understanding of the particular information we need.

Similarly, the blood tests we need are specific to the operation. It is best if they are done here by someone who knows exactly what we are looking for.

3. How long will the operation take?

Not all children need operations. However, when we do operations, they typically last between four and six hours.

4. Is it a risky operation?

Our department is a world-leader in craniofacial operations. No operation is risk-free but at Birmingham Children's Hospital, you are in the best possible hands. If you have any particular worries, please talk to Pete Noons, the nurse specialist, who will be able to answer many of your questions.

5. Will I be able to stay with my child in hospital?

Yes. One parent can stay beside your child's bed during the stay in hospital. We will also try to get a room for the other parent in our hospital accommodation. Visiting is any time for parents and 10am to 8pm for other family members.

6. How long will it take my child to get better?

Children recover far more quickly than adults. Typically children are in hospital for five or six days after an operation. Most parents describe their children as being back to normal within a week of getting home.

7. Will my child need more operations?

That will depend on your child's condition. Some children need only one operation; others need a lot more. This is something members of our team will talk to you about when you meet them in clinic.

8. Will the operation affect my child's appearance?

Yes. Your child's appearance is likely to be less distinctive after the operation. Some parents feel saddened by this, initially. Do talk to the psychologist or nurse if you would like to. Read Liam's story to find out how his mum, Lisa, felt. 

9. Will my child be in pain?

The doctors and nurses are very experienced in treating children who have these kinds of operation. We will be able to use a range of medicines to prevent pain and will always work to ensure your child is not in any discomfort.

10. Will my child go to ITU (intensive care) after the operation?

The vast majority of children we treat don't need to go to ITU after their operation. Our ward has very experienced nurses who are very used to caring for children who have had the type of surgery we perform.

11. Will the condition affect my child's development?

That depends on the particular condition. Our speech and language therapy team is there to assess this and discuss it with you. 

12. Will my child be followed up after the operation?

We will invite you back to Birmingham Children's Hospital at regular intervals for a few years to check your child and answer any questions that may have arisen, depending on your child's condition. In the meantime, you are welcome to call Pete Noons if you have any concerns.

When you are discharged from the hospital, your GP, community nurse and pediatrician will also be informed of your needs so you can be cared for nearer home.

13. How can I prepare siblings for my child's treatment?

It's good to talk to all your children honestly about what they can expect. We have found the following books helpful in preparing younger brothers and sisters for their sibling's operation. Both can be bought cheaply in good bookshops or online.

If you would like some help, do contact the nurse specialist or Psychology Department.

14. What shall I say to my child about the condition as he or she gets older?

At some point, your child will need to be able to explain his or her condition to other people. It's a good idea to take photographs of your child before the treatment and during the time in hospital. You can use these to tell your child what happened. They will also help your child tell the story for him or herself.

Do contact the psychology team if you would like further help with this.

15. There is so much information out there, how do I know what I can trust?

We would recommend that you look at the following websites:

Changing Faces

Headlines, craniofacial support

AboutFace, the craniofacial family society

Craniosynostosis Support Group

 

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