TODAY TONIGHT
September 2nd 2009
Baby Jayda
Reporter: Graeme Butler
At just four months, baby Jayda has little idea of the medical dramas that surround her - a now small blemish on her face is the only visible clue of a condition so rare it still has doctors baffled.
Dr Anne Halbert is a Dermatologist at Princess Margaret Hospital, she's been treating Jayda for what is now known to be "Phaces" syndrome - it's the name given to a series of anomalies of the brain, heart, and eyes associated with the Hemangioma birthmarks - only recognized in 1996, "phace syndrome is the combination of a large facial hemangioma with a range of either brain or heart abnormalities"
A facial Hemangioma is what many people refer to as a birth mark - and they're fairly common - patients with phace syndrome also have these birthmarks - but it's far more serious. Baby's like Jayda can have heart problems as well as enlarged or twisting arteries in their brains... in Jayda's case it's the carotid artery, "what these abnormal blood vessels are going to mean to her in the future we don't know there is the possibility that some of them could enlarge further and become an aneurysm. She could potentially have a stroke or she could lead an absolutely normal life we just don't know" and that "not knowing" is like sitting on a time-bomb for Jayda's parents Tiffany and Matt "we're at a loss where we don't know if she's going to have a stroke or if she's going to be fine and no one's been able to tell us what her future is going to hold and i suppose yeah it's a waiting game".
The first sign that anything was wrong came about a week after Jayda was born as a birthmark appeared and started to spread, "first it started off with just the small area on her cheek and as the days went by we noticed the areas across her forehead were starting come red she had like a white outline so we knew that that want' normal".
"It's very similar to a normal strawberry birthmark, except that it's much larger and it follows a certain pattern" What makes these hemangiomas potentially dangerous is they grow almost with a mind of their own - on the face that can threaten eyesight. "They do have a life of their own and that's the million dollar question is what makes it grow and what tells them to switch off if we knew how to switch them off more precisely it would be a great bonus for us."
Jayda's birthmark is now disappearing thanks to a chance break-through in France where it was discovered that a common drug used to treat high blood pressure had a dramatic effect in stopping and reversing the growth of hemangiomas."At the moment she's on the propranolol, the old heart medicine that we now use and she's remain on this until we're completely happy that the hemangioma is not showing any further signs of growth."
That's great news for parents - who like Matt and Tiffany often are distressed to see a very obvious blemish on their new born while medication is treating the outward signs of the PHACE Syndrome - treating the other conditions is much harder - "is she going to live a full life is another thing that crosses our mind we just don't know."
Tiffany and Matt are just glad they acted quickly when Jayda's birthmark started to grow - they say other parents need to be aware too, "they can grow extremely fast and cause problems that quick that if you don't do something you know you're probably in trouble you've got to act up on it."
No comments:
Post a Comment