my 11 week old granddaughter has been diagnosed and we are struggling to find out much information. some information that I have been given that she may not live till past 2-3yrs ? she has spina bifida mylo, hydrocephalus (vp shunt inserted at 4weeks of age. she was born at 33 weeks. so corrected age is only 4 weeks. Has put on weight well. Can someone direct me to some type of support in Australia and more information please. To help us understand a little more. our family has learnt so much with her other health issues but we are stuck on this one please.
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