Our daughter was born 9 weeks ago and we have recently found out through chromosome and genetic testing that she has a syndrome. We have been informed it is very rare and no name for it. A referral has been sent to the wch genetics team who we are seeing in a few weeks time.
I am wondering if anyone has seen a genetic doctor there and if they can give some insight to what the appointment will be like? If it will be an ongoing thing seeing the genetics team or if it's a once off? Or any other information in regards to the appointments.
I understand everyone's experience will be different but I just have so many questions and want to have some idea of what to expect. Thanks