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Child with CHARGE Syndrome

History and diagnosis

Voyage Specialist Healthcare have over eight years experience in providing 24/7 nurse led home care for children with CHARGE syndrome.

Matthew is a 15 month old boy who was diagnosed at birth with CHARGE syndrome and born with multiple complex congenital cardiac abnormalities. Some of these abnormalities include critical pulmonary stenosis, double outlet right ventricle, multiple ventricular septal defects and a small left mitral valve.  He has been required to undertake a number of complex operations including heart surgery, the fitting of a pacemaker and the insertion of a tracheostomy and gastrostomy feeding tube.

Matthew spent most of his early infancy in a hospital intensive care unit where he received ventilatory support.  At the age of nine months, he took a turn for the worse and was discharged to a local hospice to receive palliative care.  However, Matthew surprised the medical profession by becoming stronger and was soon able to fight off minor infections with minimal assistance. His improvement also meant that Matthew only required CPAP ventilation via his tracheostomy when asleep and could also sustain long periods of time without the need for ventilation.  As his condition stabilised Matthews multi-disciplinary team (MDT) felt that it would be more appropriate to deliver his care at home where he could enjoy quality time with his family.

The charge syndrome home care plan

Voyage Specialist Healthcare was commissioned by the local PCT to provide Matthew and his parents with nurse led support in their home. Meetings with Matthew, his parents and his MDT were arranged to fully understand his needs and to develop a person centred care plan. Both Matthew and his family were involved in the recruitment process which sourced suitable healthcare assistants to support their needs. The successful candidates were provided with full access to the hospice which allowed them to fully understand Matthews’s health and social care requirements. Each healthcare assistant received mandatory clinical training sessions from our in house specialist trainers and on-going clinical competency support from our paediatric clinical manager.  Regular MDT meetings were also held to ensure the smooth transition of Matthews care from the hospice to his home.  The plan to support Matthews care at home was a real team effort.

The outcome

Physical and emotional:
Matthew has since been discharged home and is enjoying spending time with his parents and family. He is medically stable, remains free from infection and is growing in line with expectations. Matthew has ample opportunity to be stimulated by play and is now learning makaton techniques to interact with other children and to communicate his needs more freely.

Client and Family feedback:
Matthews’s family are visited each month by our clinical manager where a home visit is completed to review his person centred care plan. At this visit Matthew and his parents are both given the opportunity to feedback any concerns which they may have with regards to the delivery of their care from Voyage Specialist healthcare.  Matthew’s parents have reported that they are happy to be home and can once again concentrate on being ‘mum’ and ‘dad’. They also feel happy that we have communicated with them well and have taken on board and acted upon any concerns which they have raised.

Commissioner feedback:
Voyage Specialist Healthcare works closely with all members of Matthews MDT and the quality of our care has received the following positive feedback. “In all accounts, Voyage Specialist Healthcare has communicated well with the MDT. This has allowed Matthew to be discharged within expected timelines and to continue receiving his care at home.

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What our clients say about Voyage Specialist Healthcare The staff do a brilliant job and really know how to look after my relative.
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Voyage Care Voyage Specialist Healthcare is part of Voyage Care.

Voyage Care supports thousands of people with learning and physical disabilities, brain injuries, autism and other needs across England, Scotland and Wales.

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