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 alarm should she stop breathing for more than 20 seconds, fortunately feeding wasn't a problem. AT 8 months now, she is doing really well. Her chin seems to have grown quite a bit and as a result her breathing has improved dramatically. She is due for palate repair May 18th.This has been a huge learning curve for someone who rarely goes to the doctor to all of a sudden having a 'medical team' to deal with!
Hi Laurel. Great to hear from you. My son Balin is now 2 1/2 and he's just gorgeous! I understand exactly what you mean about the "learning curve," it is definately a new world with a child with a serious illness. Balin had his cleft repaired at 18 months old at teh Royal childrens hospital in Melbourne. They repair PRS palletes at no earlier than 18 months here as a standard proceedure. He has come along leaps and bounds with his growth since, however we have now been informed that he has chronic sleep apnoea and will be undergoing a mandibular (jaw) distraction in the next couple of months. We are soooo not looking forward to that, but know it must be done. He is having great fun gobbling chocolate at present! Happy Easter.
Hi Jacinta, I have read so much about Balin. You guys are wonderful for sharing your story with everyone. He looks like a really happy,and indeed gorgeous little boy! I have read a bit about the jaw distraction- hopefully it will help with Balin's sleep apnoea. Have you guys had the CPAP experience? And the sleep studies? What a shocker eh? The last sleep study Olivia had she kept getting tangled in the wires and pulling things off! I think between us we slept about 4 hours! It is interesting that each plastic surgeon has their own opinion about when to repair the palates. I wonder how many children they have followed through to see what difference it actually makes to speech and jaw growth etc. Great job in getting this site up and running and giving the Australian parents a bit of 'local' support!
Hi Again, First of all- thank you. It is a big job getting this up and running as i am in no way "IT" savy. Reaching out to others makes our journey that much easier too, with others to relate to. We had CPAP when Balin was a new born, but he pulled it out then- never mind now as a strong willed little man! We don't feel it's a solution for Balin at this point. The sleep studies certainly are a joy! We've had three of four now and it never changes. I'm not quite sure how they can get acurate data given that the sleep you do get is less than "normal" but it is the only method we have. I have a great photo of Balin at about 2 weeks old, covered in the wires etc, face down as he had to be nursed prone. He looks like Frankenstine's baby. With just a massive coil of multi-coloured wires in a big ponytail coming out of his head. It was bigger than him. With regard to the pallete repair, you are right, surgeons vary. In our case, they feel that the pallete and mouth surface area are too small to properly correct the pallet. Also, given that the lower jaw is so recessed, having the cleft open can be a benefit in opening the airway. Once the pallete is closed of, there is a danger of the childs obstruction worsening. The actual surgery wasn't very nice for Balin, but he recovered quickly. Interestingly Balin was still classed under the "failure to thrive" category prior to the cleft surgery. He was well under the 3rd centile for weight and just inside for height. Since his pallet surgery his weight gain has been verticle and growth to match. Our peadiatrician mentioned that they are still unclear as to whether it is in fact the jaw distraction or the pallette surgery that makes the biggest change for many children like Balin with failure issues. Nice to chat...talk soon.
Hi all On July 4th Ill be visiting Westmead Children's Hospital in Sydney as part of the National Cleft Awareness Conference. Ill be making a presentation on PRS. Contact Cleft Pals NSW if you'd like to attend. Hope you can make it!
Hi Mick and Jacinta, My hubby and I will be at the conference and we are looking forward to meeting you and hearing your presentation. How is Balin going? Has the jaw distraction eased his apnoea? I really hope he is home and thriving in every possible way.
