I am desperately worried abut my daughter. I have just moved house and have been sent her diagnosis of 1q21.1 duplication through the post. She also has Hypertension, Hyperflexability, Hypotonia and a large and miss shaped head.
No body here has heard of it, and nobody seems to care how worried I am about her heart, she is on a waiting list to get a consultant here, but they do not seem to be in any hurry and nothing I say makes a difference.
Can anyone out there tell me what sort of heart problems can come with this and wether her Hypertension may be connected? I can not seem to find anything I need online, websites just say heart problems but do not elbaorate, I mean are these problems serious...could I loose my baby girl? Please please if anyone out there knows anything about this or how I can make the Dr listen, please get in touch with me as I cant sleep, eat or anything right now I'm so scared.
Thanks so much for reading. x