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BIOGRAPHY
Born at 11:57pm weighing 8 pounds 5 ounces, a baby boy was welcomed into the world. Jamie and myself named him, Cooper Harley, five minutes after being born the nurse was measuring his height, when my father said "what's the matter with his foot?". My face dropped, the nurse replied "It's nothing that can't be fixed!". She was speaking about his talipes or club foot.
The next day Cooper was taken down to get his first lot of plaster on, where his whole leg was covered in plaster. The doctor explained to me the process of plastering his foot and moving every week, then in 6 weeks he would have to get the tendons cut and then plastered up again.
The doctors got a skin specialist in to see Cooper as he was covered in dead skin and was very red, she said he had Nethertons Syndrome, and if he was to get unwell to take him to the hospital straight away. The doctor also found that he had a preauricular skin tag (ear tag), I didn't know what that was, until they showed me the bit of extra skin on his ear. Well with that I had doctors come in and nurses all to have a look at Cooper because it was rare. By the end of the day I was a mess, I said to the health nurse, it feels like Coopers a side show for everyone to look at. It wasn't just the nurses, it was the other mothers and their visitors too, saying look at that baby, see his skin and his plaster. I wanted out, the next morning , I said I was out of here, they said but he hasn't had his needles, I said I would bring him back tomorrow for them. I think she understood why I needed to go home. (Jasmine, the very proud big sister holding her little brother).
On the 12th of October 2008 we went to Taylors Lakes, however on the way home Cooper was very unsettled, so I got Jasmine to sit in the front and I would sit in the back of the car. At that stage I tried feeding him, taking his clothes off, and nothing helped, he kept crying. His lips were very swollen, so I wet his singlet and kept putting the water on his lips, he still cried. I told Jamie to go to the hospital. Cooper then started to roll his eyes and convulse and his arms were uncontrollable and he was having trouble breathing. I jumped out of the car and ran in holding Cooper in my arms, the nurse asked me what was the matter, then looked down at him. That was it, she open the door and called for help. He was poorly perfused and febrile with a temperature of 41 degress celsius, respiritory rate 180 and a heart rate over 200. He was taken to the Childrens Hospital where they gave him antibiotics and did a whole heap of tests, one of which was a lumber puncture. The following day, Coopers head had sunk in, it looked like the top of a hot cross bun, i was worried about brain damage, so they did an ultrasound and said it was ok. He was in hospital for a week then he was discharged and the doctors said it was a virus.
27th of January 2009 Cooper was taken to the hospital again, this time with spots around his eyes, groin and back and another temperature. The doctors got the genetics team to have a look at him in the light of his features which may be part of a syndrome. These include macrocephaly with high forehead, short nose with depressed nasal bridge, small mouth with full lips, sparse eyelashes and eyebrows with fine and sparse hair, high palate, weak and hoarse cry, left preauricular tubercle and dry skin. They got the hospital to take pictures of him and were going to review him in their clinic later on. 4 days later he was discharged again with another suspected virus.
19th of May, my 30th birthday we had an appointment to see the genetics team, she asked me a lot of questions about my family, husband, and my previous pregnancies that I had lost. She handed me a piece of paper and said, Cooper has Ectodermal Dysplasia and told me to look it up on the internet. Well the first thing I did was jump on the computer and I typed it in. The first picture that popped up was a little boy with vampire teeth, I cried. Then after coming to terms with it, I read a lot about it. I was amazed how much it sounded like him... Cooper is now 2 years old and can not sit up. He has poor muscle tone, developmental delay, his small intestine doesn’t work properly, long sighted, he has a nasal gastric tube for feeding.
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