G'day from John and Karen Aitchison, Australia. (Burpengary, near Brisbane, capital city of the State of Queensland.)
Our son Blake was born on the 27th July 1989. During the pregnancy there were a couple of threatened miscarriages, but scans indicated that nothing was amiss. A couple of days after delivery the paediatrician suspected something was wrong mainly due to Blake's small head size. He told us that he suspected RTS and of course we had never heard of it. We both had a lot of admiration for our paediatrician as he had never had to diagnose the syndrome before but did his best to answer our 1001 questions. Dr Fiumara continued to monitor his heath for the next 4 years. We remember thinking at the time that having two healthy children beforehand helped us cope with Blake's arrival.
When we first gained internet access a couple of years ago we searched for information on RTS and found the photo of Christopher Laurence. We could have been looking at a photograph from Blake's album. When we read the stories from other parents it still amazes us at the similarities our children share.
Blake really did not feed properly for the first two years of his life. Karen tried breast feeding him as she had our first two children but with Blake's abnormal swallowing action it just wasn't happening. The hospital analysed his swallowing and reflux but basically he threw up and gagged for 2 years.
At 5 weeks of age we nearly lost him with pneumonia but thankfully our paediatrician organised his transfer to an intensive care unit at another hospital where he spent the next 2 weeks. Its all a bit of a blur looking back but we spent a lot of time at hospital having surgery for hernias, unsuccessful tear duct probes and eventually DCR operations on both sides. He also had AFO's and plaster casts to straighten his feet. He has had lung complaints and asthma all his life (we would dread the arrival of winter) and had an abscess on his lung at 4 years of age spending 3 weeks in hospital recovering. Preventative medication seems to help him as his breathing has improved in recent years.
The thing that plagues him most are cyst-like lumps in his skin known as pilomatrixoma's. The paediatric surgeon said that in most cases these occur once in a patient but Blake has had five removed now and has had a couple more appear. The most serious of these was on his cheek where the surgeon could not fully remove it for fear of damaging the nerves that control his mouth. He had one recently drained from behind his ear which grew from about the size of a pea to that of a marble in 2 days.
He has just been to the school dentist who diagnosed talon cusps behind his front teeth. He needed a couple of fillings and sat there bravely. He has a crowded mouth with tight lips - we never see his top teeth unless we're helping him clean them.
Blake has attended early intervention groups since birth and attended pre-school at our local "normal" school. After much agonising we decided to send him to special school as we felt he would cope better in a smaller class situation and didn't feel the regular school system was adequately resourced to meet his needs. He is now in his third year of special school and looks forward to catching the bus each day. His development has always been delayed. He has very tight muscle tone. He learned maketon signing but has virtually replaced it with language. He has quite a good vocabulary but is sometimes difficult to understand.
He is a very social child and will not allow anyone to not be his friend. He is funny to watch at the beach as he will quite happily join up with any family and teach them to have a good time. When we go camping, by the end of the week just about everybody knows Blake.
He loves sport as his older brother is athletic and he loves music particularly when Dad plays his electric guitar. He has recently taken to the computer and is very good at operating the "Living Books" programs. His sister is very patient with him and includes him in most things she does. His older brother however is somewhat less tolerant although occasionally takes him for a game of cricket. We taught him to ride a bike by taping his feet to the pedals and then using the clips used on racing pedals. He whizzes all over the place now but still needs his trainer wheels. He loves his trampoline and is happiest with a (cricket) bat and ball at the ready.
Life has certainly got a bit easier with Blake as he has grown but he still has accidents in his pants and wears a nappy to bed. We tend to live each day as it comes although we certainly have concerns as to what the future might hold for Blake. Will he always live with us? What will be best for him?
We'd like to thank everyone who has helped put the RTS site together. It's interesting to hear about other children as we have always felt a little unique here. We have only heard of one other RTS child in our city, having spoken on the phone but never met.
John and Karen Aitchison with Daniel, Sharee and Blake.