Physiotherapy for Children with Wolf Hirschhorn Syndrome
Wolf-Hirschhorn syndrome (WHS) is an extremely rare chromosomal disorder caused by a missing piece (partial deletion or monosomy) of the short arm of chromosome 4. The symptoms of this syndrome vary from person to person based the size and location of the missing piece of chromosome 4. The incidence is generally given as 1 in 50,000 live births a year. As this condition is so rare, it is likely that physiotherapists in the UK. may never treat a child with WHS. However, like many conditions that physiotherapists come across, they will adapt their treatment to the way each child presents and treat the problems they present with not the condition. Your physiotherapist will work with you to help your child reach their potential and will liaise with other members of the multidisciplinary team to provide a programme specific to your child.
Children with WHS present with a variety of different problems; of which some can be helped by physiotherapy. Developmental delay due to low muscle tone (hypotonia) and low muscle bulk is the main reason for referral to a physiotherapist and children with WHS benefit from having a comprehensive developmental programme. Most physiotherapists will use a neurodevelopmental approach aimed at developing postural control and gaining developmental milestones such as head control, rolling, sitting, and moving. Progress will depend on the size of the deletion (the bigger the deletion the more severe the delay).
Initially, your physiotherapist will show you positions for handling and carrying your baby, as they will be floppy due to their low muscle tone and may have difficulty holding up their head. They will then work with you and your child to help them to gain their milestones. They will show you ways to support your child as they learn and how to encourage them to progress with their skills and gain strength. They will provide your child with equipment to give them support as they are learning. This might be seating or standing frames to give them the opportunity to sit and stand to learn whilst they are unable to manage this without support. They may also give your child gaiters or splints and supportive footwear to support their legs and ankles to give them the experience of standing when they are not strong enough to do this on their own and if your child progresses toward walking, they may give them a walking aid.
Children with WHS may also present with talipes (a foot deformity), shallow hip joints due to delayed bone maturity or scoliosis (curve of the spine) and your physiotherapist will be also be able to work with you to treat or manage these conditions.
All children develop at different rates and will achieve different milestones. Your physiotherapist will be with you along the journey to help your child progress with their skills and gain their potential and to give you support and advice. They will also be with you to celebrate your child’s achievements big or small.
This article was written by Cate Naylor, a UK based physiotherapist who works with WHS patients.
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