Hi, I'm Annemarie and I'm Mum to Philip, who is aged 6 and a half, and Chiara who is aged 4 and a half.  Philip has recently been diagnosed with a rare form of Cerebral Palsy called Worster-Drought Syndrome and I'm glad for the opportunity to tell you all our story.
 

Philip was born on the 23rd of December 1993, after a normal pregnancy and an induced labor, due to prolonged rupture of membranes.  He was dragged out with forceps and apgarred 9/10, so everything seemed well and we went to the ward.  Philip was a bit sleepy and didn't seem to want to latch and feed so I tried to sleep. At about 4.30 in the afternoon I was planning on going home and had even got Philip dressed to take him home when the midwife called in to see me and arrange my discharge.  While she was in my room Philip choked on mucus and stopped breathing.  The midwife grabbed him up and threw him over her arm, and ran the length of the ward with him, she suctioned him and got him breathing again, this all happened really quickly and I was still in my room, she brought him back to me and called for the doctors to come and have a look at him.  He proceeded to do the same thing again while we waited and so we were shifted to the neonatal ward.
 
 

    He looked so funny, he weighed in at 7lb 3oz, and next to all these little preemies he looked so huge.  We were in the neonatal ward for 8 days although he never did have any more breathing problems, it was noted that he was slow to latch and had an ineffective suck, but the implications weren't explained to us.  (I think this was due to the fact that all the regular staff were away on holiday)  Anyway I hated being in hospital and so as soon as the feeding tube was removed we asked to be discharged.  There began 8 weeks of hell.  Philip was incredibly sleepy until he was about 3 weeks, but I couldn't get him to nurse properly and I would have to put ice on his feet to keep him awake, he “failed to thrive” and I tried everything to get him to stay awake long enough to feed.  I remember crying in the middle of the night trying to get him to suck and he just wouldn't.  At about 3 weeks he suddenly woke up and started screaming (quietly though) all the time unless he was nursing.  When he was feeding he would be quiet and would drop off to sleep until I tried to take the food away, then he would wake up screaming again.  His jaw also had a peculiar shake to it, especially when he was tired and he couldn't seem to stay latched on, he would also pull away from the breast whenever my milk let down - he couldn't cope with the flow.
    I was back and forth to our GP, who came up with any excuse under the sun not to investigate any further, I was even told “well some babies just do cry”, finally at six weeks we were referred to the Pediatrician at the hospital, for an undescended teste, of all things.
 
 

    The Ped took one look at him and said, “ I think this child has a neurological problem” and put us back into the children's ward.  We were there for 2 weeks while they ran every test known to man and they all came back normal.  We were working with a lactation consultant and a speech therapist on the feeding but finally I had to admit defeat and put Philip onto the bottle.  He immediately became an angel, calm, never cried, slept all the time.  We've worked out since that he was dehydrated and as long as he had enough fluid going in he was happy, he would take 30 ml at a feed and take ages to get it in, he of course didn't grow very well and I would spend 8 hours a day just getting in enough to maintain weight.  Looking back I think he should have been offered a feeding tube, the toll on me was unfair.   I couldn't take him anywhere and I did nothing but feed him.  He was very resistant to feeding and so I felt that I had to force feed, which wasn't pleasant.
By this stage it was obvious that his milestones were delayed and by 6 months we were asking if “this” was Cerebral Palsy.  Our Paed said, “some people would say it is and some would say it isn't” so we said “well we need something to call it so we say it is.”  Which is where things have stayed up until recently.
    Introducing solids was lots of laughs as Philip wouldn't swallow, I couldn't get the spoon in his mouth and if by some small miracle I got food in and to the back he would gag, and bring it back.  In the end I gave up on solids and started giving pediasure through a “Haberman Feeder” (more usually used with cleft palate kids).  When Philip was about three and a half I started being able to get small quantities of food in off a spoon, originally just water, then beef broth, then broth thickened with Farex, and so on.  This was also about the time that we saw an improvement in drooling, he now only drools when engrossed in something, or if he is unwell or unhappy.
    These days Philip takes mainly pureed food and can manage some very soft foods like a certain type of cake, and scrambled egg, he finds it difficult to feed himself and is very messy, a large proportion of his food continues to be pushed out of his mouth and it would seem that he can spit out food that he can't cope with, so he now rarely gags.  He drinks about 6 cans of Pediasure per day.
    Philip sat at 10 months, crawled at 14 months and walked at 22 months, he has had periods of babbling but they never stay for long, and its my feeling that his tongue gets “stuck” in a position that enables consonants, usually the only sound he can produce is “n”, he has a voluntary “no” and makes humming noises, that are open sounds.  But he has no other identifiable speech.  Philip has good understanding and is frustrated by his inability to speak.
 

    He has significant problems with motor control and is not able to write, dress or feed himself.  He uses some sign and natural gesture, and is actually a very good communicator.  Philip has a high palate and a split uvula, and his teeth have not emerged properly.  He is extremely active and has a very short attention span, which is impacting on his schoolwork.
    He has had no episodes of aspiration but has extremely frequent ear infections and will get his fifth set of grommets soon.  He is not epileptic.  He has some autistic features, hyper focus, tactile and aural sensitivities, resistance to new objects, clothes, places etc.
    For a long time we have felt that there was more going on with Philip than “just” Cerebral Palsy, and we recently requested an evaluation at our national children's hospital “The Starship”, we also recently purchased our computer and got on line.  I immediately started looking for information that might apply to Philip and to my surprise I found a syndrome that seemed almost a perfect match for Philip.
    Worster-Drought Syndrome.  We asked the team at Starship to review him with this possible diagnosis in mind.  The team there gave him a good going over and has now indeed decided that a diagnosis of Worster-Drought Syndrome is more correct than Cerebral Palsy.  Worster-Drought Syndrome is a rare and under diagnosed form of Cerebral Palsy, so we have been right in calling it that, but WDS is more precise.
 

    These days Philip is mainstreamed at a local school, where he is just one of the kids, he loves Pokemon to the max, Trains and Dinosaurs.  He runs and plays rugby, he enjoys swimming, (just as well I'm a lifeguard) and is in a mainstream swimming class (his Dad, Roger, acts as his Teacher Aide for swimming), last term he kicked 25m in water out of his depth.  Go Philip.  He has 2 mice Annie and Clarabel, who are very good tactile therapy.  We have four cats and a dog, who he also loves.  Philip is doing very well at school reading at his age level, and with all concepts age appropriate.  Philip's little sister Chiara is going to start school later this year, she thinks her big brother is pretty cool.
    Philip has just had his approval for a dedicated computer for his school work so we are looking forward to seeing just how much he really does know.  And we are trialling Augmentative Communication Devices, as he still has no speech, apart from the magic word NO.  Philip gets his message across though , using a combination of sign, gesture and expression
 

 My reason for wanting to do this web page is that I wish Id known about this form of CP ages ago, in all my research I hadn't come upon the term before.  Thanks for listening
Annemarie Gibbs (July 2000)