Discussion Forums > Thalassemia Major

frequency of blood transfusion

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§ãJ¡Ð ساجد:
Hi C.F,

I'm really surprised why she didn't get her hubby checked for Thal ???

Marrying outside the family does not put off testing your would-be partner. Thal can be silently present in their family too.

You can't avoid fate, but we still have to be preemptive if we know that an outcome could be wrong; then blaming our fate is not a bright excuse. :-\

Canadian_Family:
Irony of the incidence is that the husband checked himself and yet his doctor gave him 'all clear' they are still struggling 'HOW'. I would call it a fate in this particular case.

Andy Battaglia:
Unfortunately, there are cases where the carrier state is not diagnosed from blood tests. Such is the case with our member, Ingreece, who knew his wife carried beta thal and was himself tested three times with no sign of any carrier state. As it turned out, they have a child who is a transfusing major, because the father actually carries the lepore trait, which combined with beta thal, causes an intermedia to major condition. The lepore trait was only diagnosed through DNA testing after the child was born. Coincidentally, this is the same combination that Lisa, our founder, carried.

Perhaps sometimes, it is fate.

§ãJ¡Ð ساجد:
 :o

Sharmin:
Hello Nanuaru,

I hope that your child is doing well.  No one should feel guilty here - we are all parents who have always wanted the best for our children.  We are parents who are dealt with a difficult situation and a lot of maintenance work to keep our children healthy.  I know that the guilt creeps up sometimes - 'if only' we could have known or prevented all of this - but if there were a way for us to prevent our children from being sick - we would have done it in a heart beat.  That opportunity did not exist - so let us consider ourselves to be brave and hopeful parents. 

Yesterday our son decided to share the 'news' of his thalassemia with a family member who was not yet aware.  He had come home with his IV after the ritux because he had a transfusion in the morning.  He showed her his IV and his desferal and told her that he has thalassemia.  She immediately pointed at my husband and myself - while my son stood in front of her - and said 'This is your fault - you did this - and now he is suffering".  I was speechless, and I have had a difficult night after this.  But I know that I did not purposely or carelessly allow my child to acquire this difficulty in his life - I would do anything to make it easier for him.  I was reassured that everything was okay - and now that he is here I don't regret anything - nor do I feel guilty for bringing this beautiful child into this world and giving him the best possible care that I know how.  These children are a gift and if I could take the pokes for him I would - as would all of you for your little ones.  We have to believe in them.

Sharmin

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