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Learn about your family’s journey through the Alder Hey Craniofacial Team.
At your first appointment, you will likely meet a large team of professionals. This may initially be quite daunting when you first walk into the room. However, the purpose of such a large team is to ensure your child gets seen by each specialty and this helps to avoid multiple different visits to hospital. You will see a neurosurgeon, a facial surgeon, clinical geneticist, nurse specialist, speech and language therapist, psychologist, orthodontist and dentist.
A first appointment may take as long as 20-40 mins. This allows time for you to meet the multiple team members and for you to ask any questions you may have.
Please bring your child’s Red Book along as we may take head measurements and it would be useful to have a view of the growth charts available.
You and your family will be given information on the condition and management options available to you and your child. As these appointments can involve a lot of information, we will provide you with information leaflets you can read in your own time. We will also provide a list of contact details for you to get in touch for any other queries you may have once you have left your appointment. We will also give you information on any follow-up appointments.
After some appointments, we may send your child for x-rays, photos, blood tests or other investigations.
Please contact us to reschedule or cancel an appointment.
Once a surgery date has been decided by you and the team, we will arrange either a telephone call or a visit to the hospital where you will meet various members of the team. The aim of this visit is to ensure your child has the necessary tests and is safe to undergo a general anaesthetic.
You and your child will see a clinical nurse specialist, an anaesthetist and a surgeon to go through the procedure and gain consent. We may also arrange some medical photos, blood tests and x-rays depending on the type of surgery your child will undergo.
This is usually a long day for you and your child as you will see multiple specialists. We recommend you leave the whole day free for getting a full assessment done. Bring things to engage your child such as tablets and books to make the day easier.
Prior to surgery, you will be contacted by the pre-operative team who will arrange to undertake a phone or face-to-face consultation to ensure your child is fit for surgery. This may also include taking some routine bloods. You will also see an anaesthetist pre-operatively.
For transcranial operations, we do not recommend shaving your child’s head before surgery. This can potentially lead to cuts and grazes which can lead to infection. We will shave approximately an inch of your child’s hair on the day of surgery to help with easy suturing of the wound.
On the morning of surgery, you will be seen by one of the surgeons and an anaesthetists. Your child will be brought to theatre between 8.30 - 9.30am accompanied by one parent. Once your child is asleep, you will be escorted to the waiting area. The surgical team will come and speak with you at the end of the operation to let you know how it all went.
All the craniofacial patients will either be on Ward 4A Neurosurgery HDU or in general HDU.
This will depend on the type of operation your child has undergone. Most craniosynostosis operations will result in an approximately 4 day stay in hospital. Other operation can result in a longer stay, approximately 7-10 days in hospital.
Learn about your Orthotics journey.
At your first appointment, you will meet at least 1 Orthotist who specialises in helmet therapy. The helmet therapy is designed to help guide the head growth following surgery to manipulate the shape of the skull.
Each consecutive appointment will reassess the helmet fit and any concerns or issues you have had. The helmet will be adjusted if necessary and if a new one is required, this will be ordered from the most recent medical photography.
A first appointment with Orthotics may not be as long as you expect as the majority of information is already collected via measurements and medical photography images. This time will be used to discuss the therapy with you, how the helmet will look and be designed and allow you to be involved in the designing process.
It will also give you the opportunity to ask any questions you may have.
The helmet will be fitted after surgery following a review by the craniofacial team.
Our current protocol is that your baby should wear their helmet for 23 hours per day and this will be for 12 months.
We do not recommend the use of helmet therapy for deformational plagiocephaly as most will resolve in time. This can take months to several years to fully resolve but with hair growth, this will camouflage any unusual head shape.
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