Hi Missy, thanks for the reply. yes, we are in the UK.
Update on the appointment. After spending the whole of last night worrying myself senseless googling about it, as expected baby chloe has segmental haemangiomas. She will need MRI and ECG scans to ascertain whether she has any H internally. Consultant not overly concerned about liver/intestines but will order ultrasound too. The consultant thinks that Chloe has a heart murmur, and surprised it wasn't picked up at birth (same hospital). We have been referred to a cardiologist ASAP. I imagine all appointments will be turned around quickly as the NHS kicks into gear very quickly for this kind of thing. The consultant was concerned about the haemangiomas in Chloe's mouth/palate and asked me to keep a close eye. Usually they would be treated with propanolol but since Chloe nurses and breaths fine we will monitor for now. I am also seeing a leading professor in the field next week in parallel as I have private health insurance. I don't expect the diagnosis or treatment to be different but since I have it, I will use it.
Of course none of this stops me worrying senseless. I've shed so many tears. I guess you sign up to a life time heart break s well as joy when you have children. Luckily Chloe has no idea and is her smiley alert self. I guess it's that that keeps me going.
I would love to hear from other parents or patients who have been through this and come out the other side.
Last edited by Chyde : 07-27-2013 at 08:35 PM.