What to expect when expecting a Thal Major Baby?

Hi All-

I am new to this web site, and happy to see how informative all of you are on the subject matter. First I would like to say God Bless all of you for your strength and dedication to your children. God has blessed you greatly, and you all are making him proud!   

I would like to request any advice for someone like me who is brand new to this disease, as my family and I are expecting our newest fam member to have B Thal Major. Advice from all of you parents who have lived the first stages and so on. I have read posts from many of you regarding your emotional stand point, and 100% my heart goes out to each and everyone of you. Over time it seems as if majority of you have taken that intial greif and turned into strength and wisdom. Please share the stages the child will go through, the technical terms to learn, what to look out for, specific diets to eat at what age, exact vitamins to take, ways to consoul baby during transfusions, and down days.

This would be most benefical for so many newbies and I really hope everyone can share their life experiences. Thank you for your time and god bless you all.

-LN

Hi LN2009
 , i hope you're getting te answer of your concerns/questions ..... best of luck   ... i hope you'll find this community ver helping, caring, loving and encouraging ..
please stay in-touch with us and keep posting... feel free to asking anything and dont hesitate to share anything you want to share ....   we all are here to help each other and we like to help each other and new onez as well .... it will be our pleasure  to help you as well ....

Best Regards
Take Care
Umair

Hi LN,

Welcome on the forum 

I'd recommend you try to read as much posts as possible on the forum in different boards,it will help you a lot,one advice i want you to remember is that before starting baby on transfusions,please get the genotype and phenotype testing done,that will help you avoid any possible antibody issues.Consider it as a must.

Chelation is started usually when your child's ferritin reaches the mark of 1000,but its been researched that the early you start chelating the less iron is stored in the body hence the least damage done,if iron is kept in control it won't be able to damage anything,we have members who have managed their ferritin so well.

With growing age you child will benefit form supplements a lot,usage of supplements has totally changed the approach of thalassemia.

Please feel free to ask any questions you have in mind,keep reading and visiting .

Zaini.