November 30, 2023
I was lucky enough to be invited to spend the afternoon with Adel Fattah and his wonderful specialist nurse, Maria, at their facial palsy clinic.
A whole afternoon (six 30-minute appointments) covered an array of facial palsy presentations: a baby with CHARGE syndrome, a toddler with CULLP, a telephone call checkup for a child with Moebius Syndrome, pre-surgery choices and post-surgery checkups. Adel and Maria welcomed the children and their parents with a friendly service, and informed choices.
(They also offer a Moebius Syndrome clinic, a full morning once every three months, of multi-disciplinary support for those who need it. They have access to psychologists, physiotherapists, speech and language therapists among many other health professionals.)
Adel and Maria are driven by the child’s decision with regards to the treatment that they offer. Surgery and Botox are discussed when the child is of an appropriate age to discuss, understand and consent to what they would experience. Adel discusses openly with the children not only the benefits of the surgery or Botox (with photographs to explain the process and the possible outcomes), but also the risks that go alongside it. He does this with such a comforting ease that the children feel able to ask questions as they arise during the appointment. The only thing he couldn’t deal with was a request for a ‘Facial Palsy Barbie’.
The surgeries discussed were simplified for the children to understand. There was the ‘extension lead’ surgery for a spontaneous smile (Cross Facial Nerve Graft – Facial Palsy UK) and the ‘muscle borrowing’ surgery for a ‘school photo smile’ (Free Gracilis Transfer Surgery – Facial Palsy UK). Hospital stays and recovery times were all discussed openly with the children and parents, and Adel and Maria were flexible and keen to work around big events in the children’s lives.
If you have an appointment coming up, it could be useful to consider what you’d like to get out of the appointment. Write down some key points for discussions – your main concerns and what you’d like to get out of the appointment; along with any specific questions you have. See our website for some guidance on this: Questions for my surgeon
Visit the Alder Hey website for more information.
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