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Jack White
Jack WhiteJack decided he wanted to come into this world one month early and so he did. Whilst the timing was unexpected, all went well throughout the birth and Jack came into this world taking a big gasp of air and letting out a loud cry (as newborns often do). These were all good signs; I was thrilled, Trev was beaming (being the proud and wonderful Dad he is), and it was all very encouraging and there was no reason for concern. We were elated and quite unprepared for our new arrival, but still very excited. Jack was very small, but proved early on that his lungs worked just fine however; he was kept in a humidicrib for the first few days just to monitor his temperature. Jack was just 4'11oz at birth, and to ensure he gained weight quickly he was tube fed whilst in NICU (neo-natal intensive care) as his paediatrician was concerned he may burn up to much body fat trying to suckle. In hindsight, it seems the real problem was his body couldn't generate enough energy and would tire easily. Jack took to the bottle at just 4 days old and was content drinking his formula. We left hospital with Jack after 7 days and his doctor's were satisfied with his weight gain during that time. We were just delighted that we were able to take our beautiful little boy home and grateful that he was strong and healthy. During the first 3 months everything appeared fine and okay, we were busy settling into our new role as parents and getting use to all things 'baby' whilst doing our best despite feeling sleep deprived at times. Jack was a good sleeper, and an easy baby to settle. He was gaining weight at a satisfactory rate and continuing to develop just as you would expect an infant would. As Jack approached the 4 month mark we began to notice subtle differences in him. He seemingly took a long time to finish each bottle of milk (in some cases up to 45mins) and when held upright he had a tendency to tilt his head right back, as if he had a flip-top head, he would gaze up at the ceiling and this significant head lag became more pronounced over time. He lacked the muscle tone and strength relevant to an infant his age and his reflexes weren't as strong either. A routine visit to his paediatrician resulted in him saying "there was no immediate cause for concern", as he felt this was something that may improve with time, he suggested we change the teat in Jack's bottle to improve the flow rate and that would speed up the amount of time it took to feed Jack. "Simple", I thought, great I can do that, problem solved. I left feeling reassured that everything was okay and content in the knowledge that children all develop in their own time. Three weeks after that visit, I received a phonecall from his paediatrician saying that he had given our conversation and his physical examination of Jack greater consideration and he suspected Jack's low muscle tone was attributed to'Prada Willy Syndrome'. He asked me to make an appointment for a consult at Hunter Genetics Clinic with a view to getting Jack tested for this condition. He told me not to be concerned and when I asked for more information, he chose his words carefully and cautiously urged me not to research this condition on the internet, as websites were often unreliable and misleading. Of course, our instincts told us otherwise and we madly jumped on the internet researching every case study and white paper we could lay our hands on after all, to be informed is to be empowered. However, this sparked fear and panic in us as parents (particularly as I already know of a family with a beautiful little girl inflicted with Prada Willy Syndrome) and we knew the outlook was bleak.
Unrelenting in our quest for answers, we managed to secure an
appointment with the Hunter Genetics Clinic in a matter of weeks and we
reluctantly read This is the Start of a Very long Journey Variety W.A Link - Jack story and special thanks to Variety W.A and their members. To Be Continued...
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