Today I was told by a professional in our 'team' that my gorgeous daughter looks like 'a typical sticklers'. I was stunned to say the least. We have been through numerous tests to rule out sticklers. But his delivery and nonchalant attitude to what he had just said to me was astounding. I am happy to have a second opinion but a little sensitivity wouldn't go astray.
Don't people say some silly things.... We have had some aweful things said to us in our time and like you, at the time you are just in shock. We are getting really good at handling peoples comments nowadays and have some great one liners planned!
Yes, some doctors are very insensitive. Don't you wish all doctors had the same bedside manner as the late Chris O'Brien. Good luck with your daughter.
We as the customers are there to remind the professional staff that they are dealing with a person whio is a son daughter loved one of a family network and we expect to be treated with respect!!!! ALWAYS remind any medical fool of this and perhaps you pay their wage!! As a nurse my time at hospital was astounding at the incapabilties of many professional and how our medical system lacks So dont be scared to push back and put these professionals a gentle reminder that they should be behaving like a professional!!!!
Hi my name is Michelle. When my little boy, Harrison was in hospital after his birth, I was in the Special Care Nursery with him talking to the midwives, talking about Harry. One of the midwives said ït's only a cleft palate". Harry has a soft cleft palate and PRS. I was so cross. As most of the midwives were lovely and very supportive, a lot of them seemed to have no ide was PRS was and thought Harry only had the cleft palate.
when my little girl was not even 24 hours old, a gp walked into my room, looked at me and then my mum and said "you should have expected this, don't know why you are so upset" Yes I had 50% chance of having a child with PRS but there was no reason for him to say what he did. When the bloody night before it was the midwife that realised that Victoria had a cleft palate.
Hi we have just had our second child,a beautiful girl that has been diagnosed with prs along with some other issues. She is looking like she will have to stay at the hospital for at least 8 weeks. We have already been away from our home (that is 280km away)for 5 weeks now and unfortunately I have to return to work on Monday as I have no sick leave left. My wife is staying alone with our 2.5 year old son at the hospital to be with our daughter. Obviously for the last week I have been on the phone to the social worker and Ronald Mcdonald house to find some accomodation so that I know that at least my family has somewhere to stay and to call "home". We cannot afford to spend $150 a night on accomodation, but as yet have not been able to find anything suitable. This has been a big stress for our family...and sometimes it feels like people dont even understand what we are going through...It would be a big relief to me and my wife if between the hospital and Ronald Mcdonald they could find something that is closer to the hospital but I just cant see when that is going to happen. I am not sure whether anyone out there canhelp our offer us some advice but any advice would be greatly appreciated. Kind regards, Benaqui
Hi Benaqui. I recently found myself in a similar situation. I had my 3rd child, 1st girl who was born on 30th July who also was diagnosed with PRS. She was transferred to CHW Grace ward. My partner & I tried to find accomodation so that we could both be at our daughters bedside. Ronald McDonald house was full & like you, we couldnt afford a motel of around $150 per night. We ended up staying in the parents hostel situated in the hospital but they didnt allow children to stay :( we had to get family to take care of our 2 young sons back home which was a 3-4 hour drive away. My partner had to get time off work so we didnt have his income to support us either. Fortunately we finally got to take our beautiful daughter home on the 1st of september. Im not sure if there is any solution under your circumstances as there wasnt any for us but to leave our other children behind. It was the most hardest thing i have ever been through in my life but I do know that it does get easier. We have come along way but yet still have so much to get through. I wish you the best of luck for you & your family. Take care, Jen.
