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Abigale Elizabeth – Born 4 November 2012

Our PRS journey!! So far…. Our daughter Abigale Elizabeth was born 11/4/2012 at 12:56AM, when she came out she did not cry and she was purple they knew right away that something was not right!! Within minutes they had on staff paediatric Dr in to examine her she then called on the specialist.


Luckily they did realize right away even though they couldn’t quite figure out why she was having issues that she had to be on her belly. The specialist however did recognize PRS right away but unfortunately didn’t know much about PRS other then they would have to put her on a ventilator and ship her over to our local children’s hospital immediately. Luckily where we live we happen to have one of the top children’s hospitals nationwide, very fortunate for that.


It was definitely the scariest experience for us thus far because we had never heard of PRS and our delivering hospital couldn’t tell us much about it, no one could even tell us if she would survive it or even come off of the ventilator!! However once at the children’s hospital and seen by their PRS/Cleft team we started to learn about PRS. The biggest relief was finally knowing that she would survive but also there were ways to help and that we had options!! I am in total awe and will forever be grateful for that hospital and her PRS/Cleft Dr!!


After telling us everything we needed to know and all our options the next thing he told me and I have told other people new to this that I will never forget is that….. It is going to be a long journey, but to remember to just breathe and start with little steps even baby steps to get through and that is exactly what we did!! It was the best advice ever and we love him for it!! He also told us not to focus too far ahead and to concentrate on the now and that is also what we did as a part of taking things step by step. First we waited two weeks to see if our daughters jaw looked like it would grow out on its own.


When it was decided that it would not we were given options to do JD, Tongue to lip or a tracheotomy. Our Dr felt that it was best and that our daughter was a great candidate for JD. At six weeks old our daughter started her journey toward wellness and had her JD surgery. Her JD surgery went very well and after about a week they started the turning process. Halfway through the turning process after 65 days in the Nicu we were finally sent home to do the rest of her turning ourselves and get back to some sort of a “normal” life. We went back weekly for her growth to be monitored then when the turning process was over we got a date to remove the outer hardware, shortly after we got a date to remove the inner hardware. Things were pretty “quiet” after that well @quiet compared to the nicu I should say haha. I should say we were able to get her off of the NG feeding tube with in about a week of being home and on the Haberman bottle, we worked very hard and at our own pace.


We took our daughter back for team visits quite a bit in the beginning to make sure all was well. The dust settled and we went on with our lives. We did get guidance from her team and Pediatrician as needed like how to introduce solids and the numerous sinus infections and such. We were also recommend to start taking her to the dentist by about age one so that she would be familiar and use to it know there is a potential for a lot of dental work in the future. At ten months old Abigale was evaluated and a date was set for her palate repair.


We worked from about seven months on with her to use a sippy cup then at eleven months old she had her palate repair! It was a 4 hour surgery by that same awesome Dr that did her JD. He did phenomenal work. He told us to prepare to be in the Picu for 48 hours but our little fighter was doing so well and up eating applesauce the very next morning the next day that he let us go home!! I feel like we have been very lucky that all has gone as well for us as it has so far!! We couldn’t be more proud or thrilled with our angel!!


She had six months of speech and did so well she was cleared by the speech specialist to stop unless we hit a bump in the road!! Our surgeon(and us too for that matter) told us he believes that Abigale will be able to accomplish anything she sets out to do, that she is a very determined child and nothing is going to hold her back. Abigale is two years old now and she will get routine checks from ENT/audiology for hearing, yearly eye exams and she will have full team visits with the PRS/cleft team every two years unless anything come up. We couldn’t be more grateful!!