Discussion Forums > Thalassemia Major

Trying to adopt Thal Major...what is daily life/routine like?

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clarkdl2:
Thank you for your responses thus far...very encouraging! 

We continue to research and pray and although we have some hurdles to face relating to a job change to make us financially eligible to adopt this little one, the condition isn't scaring us off.  If anything, learning what I have has made me more determined to get her out of an orphanage in China so she has the chance for 'chronic but managable' instead of 'eventually fatal'...

In response to the question of our location, we're in the Greater Cincinnati area.  Where are the good treatment centers?  The doctor I spoke with briefly is at Cincinnati Children's and he seemed knowledgeable...they have a hematology/oncology group, but not Thal specific, I don't think.

Again, thanks for taking the time to share your stories...I already trust this site more than some of the 'medical professional' sites I've looked at!  I look forward to an ongoing relationship assuming I can proceed with this adoption!

Blessings to you all,  Doreen

Thalassemiamom:
Hello:
We have a child with Thalassemia major.  Daily life is difficult.  You must always be aware of diet and also iron levels.  Then there is chelation therapy.  Some people cannot have exjade, others can.  The transfusions are all day long.  The hospital has to cross and type and match the blood every time.  After that you wait for them to deliver the blood.  Hopefully you would not be working or at least be able to take off 4 days per month.  Also, insurance may not cover certain things like exjade which can be quite expensive.   Blood has to be checked for hgb and iron often.  Usually the doctor wants to put in a port.  That can be good or bad depending on how you look at it.  ask others, we have not done it yet.
You should know everything before jumping in.  Our friends are adopting a cute girl from China too, kasey.   very cute.  i gave them the same warnings.   
Most Thalassemia major patients will need to have their spleen removed sometime.  Then they have to take antibiotics everyday for many years.  You do not want the spleen to rupture. 
good luck to you.
eliza

§ãJ¡Ð ساجد:
Hi Eliza,

:welcome to the family.

I know that worse can happen to anyone anytime, but we also have to take a look at the brighter possibilities which are more probable to occur than the baddies.

Treatment of Thal. varies with age and severity. Initially children don't go that often for blood Transfusion. The gap only decreases when the patient is older and requires more blood than a small child or if the spleen is malfunctioning and has to be removed; which can be avoided if you are faithful to your Desferal (or Exjade).

However, you are 100% right about the cost of the treatment. It can be pretty expensive in USA if all the things are not covered by insurance. In that case I hope that you will be able to find Thal. associations that will help you in this regard.

Wishing everyone all the best.

Take care, Peace!

Andy Battaglia:
Hi Doreen,

There is an excellent article about comprehensive care at the Cooley's Anemia site at http://www.thalassemia.org/sections.php?sec=2&tab=10

The centers listed are all in our treatment centers section, along with the contact info.

Why should all patients who can visit a comprehensive center?


--- Quote ---Many of the tests that need to be performed for a comprehensive evaluation can be done at your local institution; however, the multi-disciplinary approach may not be used at your local treatment center. Visiting a Center of Excellence for a Comprehensive Care evaluation or having your doctor collaborate with the Center of Excellence will ensure the multi-disciplinary approach is used to devise a treatment plan for you. It will also ensure that you have the access to the latest technologies used to monitor and treat thalassemia and allow you to be informed about any new trials that you can take part in.

--- End quote ---

The Chicago center is probably the closest to Cincinnati. I would suggest contacting them for their view of what to expect raising a thal child with today's care. I think you should talk to your local hematology department and see if they are willing to collaborate with a comprehensive center to ensure the best possible care.

Alexis Thompson, MD
http://www.childrensmemorial.org/findadoc/doctor.asp?dID=1009
Sees patients at
    Children's Memorial Hospital
    2300 Children's Plaza (Lincoln and Fullerton)
    Chicago, IL 60614
    1.800.KIDS.DOC

Children’s Memorial Hospital
Chicago, IL
Ph: (773) 880-6381
Fax: (773) 880-3223


And might I say, kudos to you and your husband for seeing that this is an opportunity to rescue a child and give her a decent life.  :thumbsup

Kim151:
Hi ... If I can be any help .... I had 2 children with Thal. Major ...  Please feel free to email me
My email address is Kim151@aol.com

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