aperts syndrome

[rachiec28irl]

Hi there first time poster. My goegeous daughter was born 4 weeks ago and has aperts syndrome. Came as quite a shock as we had no idea. Just wondering if anyone has had any experience with this syndrome. She will be going into hospital nextweek to under go tests and until then we have no real idea of what the future holds for us. Would really appreciate talking to someone who has any info on aperts. Thanks

Hi Rachie, welcome to MN. Congratulations on the birth of your daughter

Contact a Family are excellent and have a sheet on apert syndrome

I hope you have a positive time in hospital and can be given a plan.

Hi Rachie. Firstly many congratulations! My DD and DS4 have something called Treacher Collins Syndrome which is also a craniofacial syndrome. I know a little bit about Aperts and I know that you must have many questions about it. Do you know which hospital you will going to for her surgeries yet? The way it usually works is that the Craniofacial team will have a Clinical Liaison Nurse (normally a sister or a matron), and she will advise you on which surgeon you will be seeing for what. She is your main contact initially. Your DD will have to have some reconstructive surgeries to correct or free up things. You will be very well supported by the surgical teams involved.

When you go to the first clinic it's very daunting as usually there are about twenty people in the room, they will be from Craniofacial, Plastics, Maxillofacial, Orthodontics, ENT, Genetics, Dietitian, Speech Therapy, and quite possibly Orthoptics as well. Do your research before you go in. Write your questions down and make sure that you get their names, speciality and hopefully email addresses. Invariably you will come out if there with your head buzzing and then wishing you'd asked this, or clarified that. You will then be asked to probably go for X-rays and also to Medical Photography.

Anyway, welcome to MN. You may find some good support groups on FB for Aperts.