Epidermolysis bullosa services at Sydney Children's Hospital, Randwick

Contact details

We are located on High Street in Randwick in Sydney’s Eastern suburbs.

Enquiries for care and appointments at Sydney Children’s Hospital:

Ph:  (02) 9382 0389 or (02) 9382 2222 page 46562.

Fax: (02) 93920796 address referrals to SCH EB Clinic

The Epidermolysis bullosa service at Sydney Children’s Hospital in Randwick offers a multidisciplinary service to paediatric patients across NSW and the ACT, including comprehensive admissions from birth, through to transition to adult care.

We will liaise with your family, GP, local services, schools or anyone else you need help with to coordinate care and receive appropriate EB care.

Our services

  • Monthly multidisciplinary clinics and support for children with EB.
  • Short day admissions on the medical day unit if required.
  • KidsGPS coordination of your child’s appointments and communication. KidsGPS can locate local services, or organise clustered bookings for your child’s clinic appointments at SCH.
  • Inservice and educational support for your local health care providers that have never heard of EB. Home visits or teleconferences can also be organised.
  • Child Life Therapy provides resources to assist your child through procedures when they are anxious.
  • School intergration and support.
  • EB care through medical procedures.
  • Access to EB education material to support medical care.
  • Resources and support for parents (see below).

Referring a newborn baby 

For newborn babies suspected of Epidermolysis Bullosa, this flowchart offers an explanation of the care pathways available, and issues to consider when transferring a newborn baby to SCH.

DEBRA provides information regarding management of a newborn baby in hospital, have a look at Newborn care for guidance and further support.

Dressings and wound care/pain management

Children with EB require specialised non-adhesive dressings. Use of inappropriate dressing can results in blistering and skin loss. Early contact with a specialised hospital, access to appropriate wound care and implantation of prevention strategies to reduce friction when handling will provide the best outcome for a child with EB

 Access to dressings

Children with EB can require specialised dressings to assist with wound healing. Standard dressings can not only make current wounds worse but can sometimes cause large wounds when they are removed.

Wound care with dressing support is provided through our Dermatology department where children can be linked to the National Epidermolysis Bullosa Dressing Scheme that is run through Independence Australia. This scheme offers anyone in Australia with a clinical or genetic diagnosis of EB, access to appropriate EB dressings that can be delivered to their home each month. There is a small monthly co-payment charge for this service.

SCH EB staff are able to apply to the National dressing scheme for you.

Read more about the National Epidermolysis Bullosa Dressing Scheme

Home nursing service

The Sydney Children’s Hospital Network offers a Hospital in the Home (HITH) nursing service and if you live within the catchment area for the network, we will support your family to learn to do wound care in your own home.

Education and Support for your local hospital

If you do not live within the network boundary, the SCH EB nurse will liaise with your local hospital, provide education for their staff, and a site/home visit to help your local hospital to be able to support you with wound care.

SCH will remain in contact with your local hospital and support them with anything they need. You will also continue to attend SCH EB clinics and services for other areas of your EB care.

Growth and development

You can encourage your child to participate in most activities in life. Using prevention techniques, support from the EB team, some information from Occupational Therapy, or a few alterations to your child’s chosen sport or area of play, we would like to encourage your child to participate in everything they would like to.

Childhood is a time of play and participation, and education and support will greatly assist schools/daycare/sporting associations to provide EB friendly options for your child.

Nutrition

Evidence suggests that nutrition plays an essential role in wound healing and children with EB (particularly those with more severe types) will naturally require a higher calorie intake.

It’s important that an early referral to nutritional/dietetics services is made and regular weight and growth records are kept.

Our dietetic team will communicate with families, GP’s, Early childhood services, and local dieticians to help set up regular growth measurements and any changes to diet that are needed to support wound healing, and appropriate growth.

Dental care

Dental care is important in all children with EB. Blistering does occur in the mouth and the use of an extra soft, children’s-sized toothbrush will make brushing more comfortable.

The dental team at Prince of Wales Hospital, located on the same site as SCH have staff experienced working with children with EB. 

Early referral along with regular visits to your dentist for professional cleaning and fluoride treatments is highly recommended for prevention of dental cavities.

Hygiene

Regular bathing is one of the most effective ways to assist with wound healing and keep infection away. Many children with EB do not like bathing, so establishing a fun, interactive bath time routine from an early age with appropriate pain management can assist with this.

Newborn bathing can be established as soon as possible. Newborns can be bathed with their dressings on, and you can discuss your EB team what can be added to the bath to help heal wounds.

Salt can be added to baths when your child has extensive blistering and may help with any pain experienced during the bathing process. Salt should be added at a rate of 90g per 10 litres of water to achieve a 0.9 per cent solution.

Your EB nurse can provide support and information about bathing and salt use.

Clothing and footwear

Loose clothing is recommended for people with EB. Clothes with minimal seams, tags and elastic are less likely to cause trauma to the skin than tight synthetic clothing.

Shoes need to be well-fitted, soft, flexible and breathable.

Your EB nurse will have a list of shoe and clothing brands that other EB patients have found comfortable.

Educational support

Individualised education support is provided for communities and families living with EB. Types of services provided are GP/daycare/school/and local nursing services site visits and support creating management plans.

Liaison with local hospitals with KidsGPS care plans developed to provide open communication between your child’s local health care providers with the EB team at SCH. 

The EB team at SCH can assist families in many aspects of their care;

  • We can assist GPs and local health care providers to manage care locally.
  • We provide health care plans, and support for community therapy providers, schools and local services.
  • Onsite visits are organised to provide education to local schools, daycare, GP’s and maternity hospitals for families linked to our care.
  • Video conferencing is also available for families or services around the NSW or ACT if travel is not possible.

Daycare and school

  • Providing support documentation for Department of Education Health Care plans, NDIS applications and carer support.
  • Hospital links to daycare and school are established prior to your child starting care.
  • A site visit can be set up with your centre manager or school principal to provide education about EB, assist with establishing appropriate support strategies prior to your child starting school.

Professional Resources

Support agencies 

DEBRA Australia

DEBRA Australia offers advocacy, financial support, emotional support and networking opportunities to families who are living with EB. Have a look at some of their helpful resources: