Pierre Robin Australia Inc

gc0447 · gc0447

Hello, everybody. My name is Georgette Couvall and I'm one of Dr. Kenneth E. Salyer's (http://www.worldcf.org) patients. I was born (10/16/75) with a Craniofacial condition which included nasal, forehead, cheekbone deformity and absence of my right eye. I've had approximately thirteen sur...

Bonnie Lass · Bonnie Lass

As I filled in yet another hospital admission booklet and listed my twenty plus surgeries for eyes ears joints and the like I was reminded of the fact that until just recently I was unable to deal with the enormity of my world. Until a label came along (Sticklers) I was just unable to believe that I had so...

administrator · administrator

Hi My daughter and I both have Sticklers and PRS. Victoria is 6 years old. Because of the Sticklers, there was 50% chance of her inheriting both Sticklers and PRS. Way back when I was a baby, I spent 13 weeks in hospital and had a tongue lip adhesion done which was released when I had my cleft palate repaire...

Hellrazor · Hellrazor

Hi Im Helen, 49 year old Nana of a beautiful little girl, born 24th oct, and has just been diagnosed with PRS, still a bit in shock, over all this, heads reeling, because my daughter was the type who wouldnt even take a panadol for fear of harming the baby.... and now this !! i have done heaps of research eve...

administrator · administrator

Hi, My name is Paige and i am now 23 years old. i was born with PRS. my mum wasnt informed of what i had until about a week later. i was kept in hospital for a few weeks and then sent home. about two weeks later i was rushed back to hospital cause i lost too much weight due to not feeding properly. doctors put a NGT...

administrator · administrator

hi all! Yes im in the same boat we didnt know we were having a prs child with a cleft it was a very emotional surprise. Born on the 27th of march 2009 with respiratory distress noah was taken from me within minutes and sent up to royal womans hospital were we stayed for 5 weeks.at the start i was breastfeedin...

administrator · administrator

Hi, my daughter Jasmyne was born on the 10/8/09 and like most of you we didnt know she had PRS until she was born. She spent the first week in a special care nursery at local hosp and was then transferred to Syd Kids at Randwick, Sydney in the ICU. She spent 1 week in ICU and then 3 weeks in a ward and then transf...

administrator · administrator

Hi, Our names are Barry and Michelle. Our little boy, Harry was born with a soft cleft palate and PRS. This wasn't picked up in any of his ultrasounds at all so, when he was born it was a big shock to all of us. He was born at 9am and i didn't get to see him or even hold him until 9pm that night. I did have an electiv...

administrator · administrator

Hi, My son Ethan was born on 22/2/2009 and as is probably most peoples case, we had no idea there was something different until he was born. We were told he had a cleft palate when he was born and that he would need to go to Princess Margaret Hospital in the next few days to discuss treatment but had no idea un...

administrator · administrator

Hi, my beautiful daughter Mia was born with PRS on the 10th November 2008 and as with many others we had no idea there was a problem whilst in utero. She spent the first 4 weeks at Princess Margaret Hospital for Children in which we learnt how to feed her properly with the Haberman Feeder...a challenge an...

administrator · administrator

Hi everyone! My name is Nita, my husbands name is Jonathan and our first and only daughter of a year and a half is Elaina, who was born with PRS. Elaina, like most PRS babies, was born in respiratory distress. It took doctors about 10 minutes to get her breathing on her own but not with out the assistance of...

administrator · administrator

Hi guys, Thank you all so much for your well wishes. Balin's distraction was carried out on Tuesday and was a success. He unfortunately developed a lung infection in the days following and we have been battling that as well. I won't lie, it's been tough, but much of what we have experienced has been due t...

administrator · administrator

Hello everyone. Our daughter Alice was born 17th December 2008 with PRS. She was flown from the Gympie Hospital down to the Royal Children's in Brisbane. It was 2 days before I was able to get down there and see our daughter. She was kept in ICU for a week and given a nasopharangeal tube(if that's how you s...

administrator · administrator

Hello fellow Pierre Robians. My name is Anna and our daughter Ruby is now 9 years old. Ruby was born with severe PRS and lots of other special attributes. I think it is wonderful to have this website set up so you can all communicate and support each other. Ruby spent her first 9 months at RCH ,tracheostom...

administrator · administrator

Hi all my son Flint also has PRS. It was a surprise to us as we were unaware of his problems prior to birth. To add to Flints difficult start he was 2 months prem. he required assisstance with his breathing but turned a corner at his corrected age of 40 weeks gestation. We were lucky enough to escape the jaw d...

administrator · administrator

Hi ! My daughter, Olivia, was born with PRS July 29 2008 in Sydney. No indications at all that there would be any problems before hand so we were surprised to say the least! The first 4 months she failed to thrive, we were using CPAP due to obstructive sleep apnoea,plus a portable monitor which would alar...

Topic		Started By	Replies	Views	Last Post
	Hello from Craniofacial Patient: Georgette Couvall (Dr. Kenneth E. Salyer's Patient) (Preview) Hello, everybody. My name is Georgette Couvall and I'm one of Dr. Kenneth E. Salyer's (http://www.worldcf.org) patients. I was born (10/16/75) with a Craniofacial condition which included nasal, forehead, cheekbone deformity and absence of my right eye. I've had approximately thirteen sur...	gc0447	0	1505	Mon Apr 2 15:58 2012 by gc0447
	an adult approaching fifty and finally finding the answer PRS and Stickerls (Preview) As I filled in yet another hospital admission booklet and listed my twenty plus surgeries for eyes ears joints and the like I was reminded of the fact that until just recently I was unable to deal with the enormity of my world. Until a label came along (Sticklers) I was just unable to believe that I had so...	Bonnie Lass	0	1088	Tue Jan 24 23:59 2012 by Bonnie Lass
	HISTORICAL POST: Cin & Victoria 7/27/2009 4:04:59 PM (Preview) Hi My daughter and I both have Sticklers and PRS. Victoria is 6 years old. Because of the Sticklers, there was 50% chance of her inheriting both Sticklers and PRS. Way back when I was a baby, I spent 13 weeks in hospital and had a tongue lip adhesion done which was released when I had my cleft palate repaire...	administrator	2	569	Mon Nov 7 01:12 2011 by Miss Red
	Helens Granddaughter (Preview) Hi Im Helen, 49 year old Nana of a beautiful little girl, born 24th oct, and has just been diagnosed with PRS, still a bit in shock, over all this, heads reeling, because my daughter was the type who wouldnt even take a panadol for fear of harming the baby.... and now this !! i have done heaps of research eve...	Hellrazor	0	523	Sun Oct 30 16:00 2011 by Hellrazor
	HISTORICAL POST: now 23 years old paige 5/18/2010 5:08:36 PM (Preview) Hi, My name is Paige and i am now 23 years old. i was born with PRS. my mum wasnt informed of what i had until about a week later. i was kept in hospital for a few weeks and then sent home. about two weeks later i was rushed back to hospital cause i lost too much weight due to not feeding properly. doctors put a NGT...	administrator	4	589	Sun Jun 12 18:06 2011 by Bav1975
	HISTORICAL POST: Noah deb 11/18/2009 12:20:05 AM (Preview) hi all! Yes im in the same boat we didnt know we were having a prs child with a cleft it was a very emotional surprise. Born on the 27th of march 2009 with respiratory distress noah was taken from me within minutes and sent up to royal womans hospital were we stayed for 5 weeks.at the start i was breastfeedin...	administrator	1	533	Thu Apr 7 16:53 2011 by administrator
	HISTORICAL POST: Ang 11/18/2009 12:10:51 AM (Preview) Hi, my daughter Jasmyne was born on the 10/8/09 and like most of you we didnt know she had PRS until she was born. She spent the first week in a special care nursery at local hosp and was then transferred to Syd Kids at Randwick, Sydney in the ICU. She spent 1 week in ICU and then 3 weeks in a ward and then transf...	administrator	1	791	Thu Apr 7 16:52 2011 by administrator
	HISTORICAL POST: michelle 9/24/2009 10:16:59 AM (Preview) Hi, Our names are Barry and Michelle. Our little boy, Harry was born with a soft cleft palate and PRS. This wasn't picked up in any of his ultrasounds at all so, when he was born it was a big shock to all of us. He was born at 9am and i didn't get to see him or even hold him until 9pm that night. I did have an electiv...	administrator	0	526	Thu Apr 7 16:51 2011 by administrator
	HISTORICAL POST: Ann 10/5/2009 11:27:38 PM (Preview) Hi, My son Ethan was born on 22/2/2009 and as is probably most peoples case, we had no idea there was something different until he was born. We were told he had a cleft palate when he was born and that he would need to go to Princess Margaret Hospital in the next few days to discuss treatment but had no idea un...	administrator	4	584	Thu Apr 7 16:50 2011 by administrator
	HISTPRICAL POST: Sam 7/31/2010 10:50:46 AM (Preview) Hi, my beautiful daughter Mia was born with PRS on the 10th November 2008 and as with many others we had no idea there was a problem whilst in utero. She spent the first 4 weeks at Princess Margaret Hospital for Children in which we learnt how to feed her properly with the Haberman Feeder...a challenge an...	administrator	7	605	Thu Apr 7 15:54 2011 by administrator
	HISTORICAL POST: Nita 5/11/2010 6:54:32 PM (Preview) Hi everyone! My name is Nita, my husbands name is Jonathan and our first and only daughter of a year and a half is Elaina, who was born with PRS. Elaina, like most PRS babies, was born in respiratory distress. It took doctors about 10 minutes to get her breathing on her own but not with out the assistance of...	administrator	1	668	Thu Apr 7 15:47 2011 by administrator
	HISTORICAL POST: Jacinta C 6/6/2009 3:08:55 PM (Preview) Hi guys, Thank you all so much for your well wishes. Balin's distraction was carried out on Tuesday and was a success. He unfortunately developed a lung infection in the days following and we have been battling that as well. I won't lie, it's been tough, but much of what we have experienced has been due t...	administrator	0	457	Thu Apr 7 15:45 2011 by administrator
	HISTORICAL POST: Charmaine 5/8/2009 6:49:31 PM (Preview) Hello everyone. Our daughter Alice was born 17th December 2008 with PRS. She was flown from the Gympie Hospital down to the Royal Children's in Brisbane. It was 2 days before I was able to get down there and see our daughter. She was kept in ICU for a week and given a nasopharangeal tube(if that's how you s...	administrator	0	489	Thu Apr 7 15:44 2011 by administrator
	HISTORICAL POST: Anna 11/22/2009 8:24:10 PM (Preview) Hello fellow Pierre Robians. My name is Anna and our daughter Ruby is now 9 years old. Ruby was born with severe PRS and lots of other special attributes. I think it is wonderful to have this website set up so you can all communicate and support each other. Ruby spent her first 9 months at RCH ,tracheostom...	administrator	10	519	Thu Apr 7 15:17 2011 by administrator
	HISTORICAL POST: Nat 4/28/2009 12:36:02 PM (Preview) Hi all my son Flint also has PRS. It was a surprise to us as we were unaware of his problems prior to birth. To add to Flints difficult start he was 2 months prem. he required assisstance with his breathing but turned a corner at his corrected age of 40 weeks gestation. We were lucky enough to escape the jaw d...	administrator	0	503	Thu Apr 7 15:13 2011 by administrator
	HISTORICAL POST: Laurel 4/6/2009 8:23:35 PM (Preview) Hi ! My daughter, Olivia, was born with PRS July 29 2008 in Sydney. No indications at all that there would be any problems before hand so we were surprised to say the least! The first 4 months she failed to thrive, we were using CPAP due to obstructive sleep apnoea,plus a portable monitor which would alar...	administrator	5	477	Thu Apr 7 15:11 2011 by administrator
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