Rare Vascular Malformation Patient Assisted by Telehealth

Thursday, 13 March 2014
Jess Pethybridge and her family have had a long and arduous challenge in dealing with a rare vascular malformation.

Jess was born with an arterio-venous malformation or AVM, a condition caused by an abnormal connection between arteries and veins.

The condition was diagnosed when she was four which led to extensive consultations and treatment with specialists at Sydney's Wesmead Children's Hospital.

Since moving from Parkes, NSW, to Portland in 2006, consultations relocated to the Royal Children's Hospital in Melbourne after the condition escalated in 2011 when Jess started haemorrhaging from her gum.

As a result of the bleeding, Jess spent four months in the Royal Children's Hospital and went through 24 procedures involving over 33 blood transfusions to control the problem.

It was an especially tough time for the family but Jess has pulled through and is now doing well.

After returning home from the long hospital stay, Jess, with her parents Tom and Mandie and little sister Emma, were initially driving to Melbourne for a check-up with her specialists on a fortnightly basis. This can be time consuming and frustrating as the family has to complete an eight hour round trip plus up to an hour in the waiting room for just a 15 minute consult; often needing overnight stays in Melbourne.

More recently those visits have stretched to every three months.

However, a telehealth initiative connecting Portland District Health (PDH) and the Royal Children's Hospital has made the consultations a lot easier for the family.

Every second consultation is now carried out at PDH where the hospital has helped to arrange teleconferencing with specialists from the children's hospital.

As a 14-year-old year 9 student at Portland Secondary College, Jess is happy to stay home if possible. I don't like missing out on school, she said.

The initiative means a big time and cost saving for the family and Dad Tom said PDH’s help in arranging the telehealth conferencing had been great as they can't access good internet coverage at home. It's a four-hour drive each way so we tend to stay overnight. To avoid that once every three months has been really helpful, he said.

The teleconference usually discusses medication, any bleeding incidents, Jess's blood tests and what she's been getting up to at school and home.Jess and her family still visit Melbourne every six months for a check-up in person.

The good news is that a RCH led trial involving ongoing medication appears to be working. Jess has remained stable and well in recent years with the hope that the AVM may reduce in size.

In some cases the condition can be eased by surgery but that hasn't been possible for Jess.

Jess and her family have high hopes for the medication as they enjoy a prolonged period of stability.

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