Diagnosis after 15 month and my baby has something the matter with her heart

[mummytopebs]

I dont know what to feel. I am pleased we have finally got a diagnosis as it is better to know but I am now very scared.

Anyone any experience of heart problems in children, I just really dont know what to ask or say.

saggarmakersbottomknocker
HI! :o

Sorry to other posters, I seem to have hijaked this thread.

mummytopebs Feel free to PM me if that is easier x

Scan date 16th May so fingers crossed for a definite diagnosis and plan. We are not going to Spain, dd consultant has been in touch and does not want her to go. She has been very dark hands this weekend and now I know it is her heart I am starting to notice where before I thought it was the cold causing it I now think it is the heart causing the cynosis which is in turn turning the limbs cold, I have noticed they change colour when she is doing physical things.

Mummyplum will your doctor not re refer using the choose and book system?

Good luck, where you going for the appointment?

Sorry about the holiday mummytopebs but best be on the safe side if the consultant thinks she's not fit to fly. Gllod luck with the appointment - here's hoping you get a definite diagnosis and a plan to solve peb's issues.

Good to read you're getting somewhere with a diagnosis. I'm sure this must be a very frightening time for you but your dd is in good hands and heart surgery in children (if that's necessary and that's a big if) is excellent nowadays.
Whatever you're told and offered just keep asking: what does that mean, what are the risks of x treatment, what are the alternatives and what happens if you do nothing.

Hope it went well today mtp and you have some answers.

Hope that the appointment has gone well :) x

have you found out what the heart condition is?? We have been through 2 open heart surgeries and ds will need another.

Sorry havent been on we went on a caravan holiday seem as we could not go abroad. The ct scan went well, no results as of yet :(

I've been wondering how you're getting on but I hadn't seen this thread until now. How are things? Have you had the scan results back yet?

And mummyplum, have you had any luck?