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 until the ambulance came to transfer him the following night that it was more then "a cleft palate". It was the nurse that was transferring him that told us it was more urgent because of his "chin", and then she mentioned "breathing" until then we had no idea there was anything else that could be wrong. He was being nursed on his back and had a feeding tube in his mouth. The next day when we went to see him (I had a c section so couldnt go up with him) the doctors rattled off a whole load of tests they were doing which were "routine" and possible things they were looking for. Our stomach and hearts just sank. We spent just over 4 weeks in hospital and could finally bring Ethan home to be with his elder brother. Ethan has reflux and has a NGT in as he is not a hungry baby at all and we dont know why he doesnt want to feed (either solids or milk) and have undergone ultrasounds, barium meal and tomorrow are having an EEG as they think there may be "something else" there. Looking at him compared with other babies I honestly dont think there is much difference in his developement compared to theirs but better to be safe and get ontop of something early. Hopefully he does as he has done so far and prove them wrong - amazing how strong willed they can be at such a young age. In WA we use the Farlin dummy's (100%) silicon for the PRS babies and we have been able to get in contact with a supplier in Singapore, so have given PMH some for future parents but if anyone has missed out and would like one, I can try to get some more. Lots of ups and downs during this journey but we all do as best as we can. Love and best wishes to all of you out there. Ann
Hi Ann. We also didn't know that Harry had PRS and a soft cleft palate. These were not picked up in any ultra sounds at all. I also had a c.section and I didn't see harry until 12 hours later, this was the first time i sw him and actually gad a cuddle with him. He was born at 9am and we were told about six hours later he had a cleft palate. We don't even remember the doctors telling us he had PRS as, it was all a bit of a blur. They also kept giving us info on cleft palates that wasn't appropriate for us to read ( mainly ablout cleft lip and surgery dates that weren't to do with PRS). A Speech Therapist showed us how to use a habermann bottle as, a lot of the midwives didn't know how to use one. We think a lot of them just used his ngt as the easy way of feeding him, instead of using his bottle. He drank a lot more fo us than he did with them. Harry wa in our local hospital for 50 days ( half the time in the special care nursery and the rest in the children's ward). He also had to have many tests: heart x ray, gentic testing, eye tests, etc to tule any other things out. He eventually had his ngt out at six months as, it fell out whilst we were in Melbourne and the cleft coordinator at the RCH said he didn't need it, as he was drinking all of his bottles as well as eating some solids. He now eaqts more than his 4 year old brother! He had his palate surgery in July as well as hving grommets inserted. He is now a happy little boy. Like your little boy, Harry has proven his specialists all wrong as well and done things they said he wouldn't be able to do ( eg they saig he would still have his ngt until at least 18 months old or be ab le to eat well). It alsways good to prove the doctor's wrong. Harry is also a very determined and very strong willed little nearly two year old. We do still go to speech therapy and have regular hearing tests but, looking at him, you wouln't know that thee was anything "wrong" with him. A lot of people we know, especially at playgroup and music group don't even know about his PRS. I wish you and your little boy lots of luck, especially with the rest of his test results.
Hiya, Reading your stories still makes me teary every time. Thank you for sharing. It is so clear to see that the sharing is helping so many families that are coming across this site evryday. Your stories are all so similar with one common theme- "no one told us" and "no one had the right information." I wish you both all the best and hope your little stars are doing well.
Thanks Jacinta. Thanks to you and Mick, we would have know where else to go to for sharing our stories and talking to other families in the same situations as us. Thankyou so much for making all of this possibe for everyone, Barry and I appreciate it so much. Thankyou.
Yes, thank you very much Jacinta for doing a fantastic job. Its nice to speak with other families who are going or have been through the same things you are going/have been through. Ethan is doing really well. He pulled his tube out 2 weeks ago and we thought we would do a "sink or swim" try at him taking his bottle as nothing we had been told to do by the feeding team/health professionals had got us any further ahead. We were going to do a program run by a hopsital in Austria that specialises in getting the NG Tubes out of kids with feeding aversions but he pulled the tube out just before we registered and thankfully, he only lost weight for the first week (380 grams) and then the following week put on 200 grams. We now know we can keep the tube out. Ethan had his grommets put in today (they wanted to wait until 11+ months when he may have the cleft repair but I didnt want him to wait that long, knowing that he couldnt hear a lot of the things around him and it would delay his development, so I went private and got it done ourselves. He is now happy and sound asleep in bed. Hopefully now only the cleft repair to go and then we are full steam ahead to putting all of this behind us! Apart from the hassel of having the NG Tube in, I am so glad not to have strangers stop me in the street/shopping centres etc and ask if he is prem/whats wrong/but they can fix that now etc!!! Ethan is like any other "normal" little boy and should be treated the same. How is Balin doing after his jaw surgery? Hopefully things have settled down a bit for you now and he is back to smiling Thanks again xx
