Hi my name is Michelle. My 22 month old Harry has a soft cleft palate and PRS. I remember a few weeks after he was born, he was still in the special care nursery. I was talking to the midwives about Harry. One of the midwives said ït's only a cleft palate". I was so cross. Most of the midwives were lovely and very supportive and seemed to have a little understanding of PRS but, this one midwive seemed to have no idea how serious PRS actually is. Maybe some of the midwives or nurses who do care for our children need to have some training or some basic knowledge of what PRS is. We live in Ballarat and most of the people caring for Harry obviously didn't know what PRS is.
Hi Michelle, This is a good point. Mick has been doing a few inservices for nurses and mid wives at Monash hospital etc, to help educate them in the seriousness of PRS and what parents have to cope with ongoing. Perhaps we should look at doing an inservice up your way?
I agree a lot of nurses and even doctors have no idea what PRS is.
My gp who did some of my prenatal care kept telling me that PRS wasn't a concern. I could not get him to understand that as a person with Sticklers I had 50%chance of having a child with PRS.
The only other time it really stood out that nurses had no idea what prs is was when Victoria was 4 months old, she spent 10 days in my local country hospital. My god, she was like a novelty. All the nurses came to check out the baby with a nasal phargeal(sorry I cna never spell it) tube and how to feed with a habermann. I felt like we were on display, really annoyed the crap outta me.
Hi Jacinta, it would be fantastic if yourself or Mick could come up to Ballarat and do an inservice at our local hospital. The staff definately need some training. Thanks
Agreed! There is so much pressure. I battled with expressing for 2 months, doing 2 hourly expresses overnight until it nearly killed me!! Spendning months in intensive/special care is stressful enough. You can only do your best and if your best is 1 dsay, 1 week or 1 year- i congratulate you!!
HI Angie<br /> <br /> We were also given a dummy.....s special dummy for children with PRS. After doing some research they say it helps strengthen the jaw, growth and a babies ability to suck better. Helped for my baby anyway in the first few months. She wasn't able to attach to me so the dummy was the next best thing I suppose u can say!
Hi Angie, our speech pathologist also recommended a dummy for Harry. With harry, it actually did help him and it was a "normal" dummy. After a few months though, he'd had enough of it. For our cild, it was beneficial but, for your child, it may not have been. Harry's condition was mild so, they may recommend it for babies who's condition is only mild?
