Looking after an infant with Thal

Hello,

I should briefly introduce myself. I'm Sameet and I live in Melbourne with my husband and beautiful daughter Eva. Eva was diagnosed with Thal major at 3 months. I was shattered when we found out because we had no idea that my husband was a carrier. Over time we have managed to make me stronger as Eva needs a positive mum for her look at all this positively.

Currently I'm on maternity leave from work but I resume work next year in Jan 2012. I'm doing my masters in medical ultrasound as well so I'd be working 3 days of the week and also studying. What I wanna ask you guys is whether I'd be able to do all that along with looking after Eva?

Should I still pursue all this or does a baby with Thal require 24/7 attention??

Thanks a lot

My son is almost 5 and has beta thal major. He is an active, typical 5 year old. Day to day he requires no additional or special care.

It is necessary to be able to take him to the lab to test his hem. level, etc. every 3 weeks past transfusion. It is necessary to be able to take a day off from work every 3 weeks for his transfusion. (Actually I take 1/2 day off of work and he takes 1/2 day of school and we arrive at hospital by noon and are done by 4:30.) Also must make certain to mix his Exjade each day. And to advocate for him receiving the best care, follow current standards of care from thal center, and make sure to get all annual exams necessary.

My son does not use the desferal pump, which I realize would require more care/administering it.
Also, my son does not have a port so I we do not have additional ER visits due to precaution when fevers.

Nicole

İ am not a mother but İ want to say snything nevertheless. i think it is important to continue your studies and work. i am like Eva but with a different blood disorder. both my parents have worked always fulltime. İ do know it is not always easy but it can exactly work all together very well. Besides you can show your daughter that thal should not able to stop her at all.
İn UK it is possible to get transfudions on saturdays. i know hodpitals are not fond of it but it makes lur lifes (and there parents) so much easier.

Kind regards, D