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Hello this is Sharon Dinnes Whitefish, Ontario Canada
Our family was introduced to NS when our grandaughter was born in 2002. We knew before she was born that she had a heart defect so arrangements were made for her to be born at the McMaster University childrens hospital in Hamilton, Ontario. When she was born the geneticists visited my daughter in the hospital and identifiied that the baby had NS. She also took one look at my daughter and her sister and told them that she suspected they also had NS. Our journey actually began in 1975 when our first child was born with a coarctation of the aorta and a VSD. We struggled with a number of issues not knowing what or why this poor baby was so sick. Our second child was born two years later and again we struggled with a number of issues unaware of what exactly was happening. Number three, a son came along and I was now used to dealing with a baby that needed a lot of care. Our fourth child was born with a hypoplastic left ventricular and lived for 3 days.
By this time we were a case study a Sick Kids in Toronto because we had four children with four different heart defects they told us unrelated. We never really heard anymore from Sick Kids genetics department although the Cardiac department became our second home. We had a faboulous Dr. in Guelph, Ontario that kept me sane all those years.
We managed thru surgeries and lots of Dr. appointments to raise three wonderful children. Our oldest now has her PhD and is doing cardiac research in Australia. Our second has started her family and is dealing with two children with NS. Our third, a son has just married.
We certainly did not have the information that is available today related to NS. We just struggled along and did what was necessary to ensure the best care for our children. As we deal with the issues that my grandchildren have there is so much information out there now to support parents.
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