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

Hi everyone...I'm writing to ask for advice and personal experience as my family is considering applying for a precious 4 year old little girl from China who is diagnosed with Beta Thal.  We have access to very few of her medical reports, but what we do have has been reviewed briefly by a hematologist here in the states and he supports the basic diagnosis, but there was not enough info to determine intermedia or major.  Her orphanage caregivers describe it as "very serious" and state that she gets transfusions monthly and that her doctors have recommended a bone marrow transplant, but have not yet found a match.  (We are working on getting more medical reports)

So, here's what I need to know: assuming this is major (based on monthly transfusions), what would life look like for us?  Does this effect every day, every meal, every activity, every choice? Or is it only 'noticeable' close to transfusion time or during sickness?    Sort of a 'day in the life' scenario, or I guess a 'month in the life' would get me through the whole cycle between her transfusions.   (keep in mind that we are in the US, and so I'm sure that makes a difference in what options are available...)

Thank you in advance for sharing your stories...I've been reading many posts in the last couple days and have been amazed (and scared and encouraged) by what I've read.  My prayers are with you all and with this precious child I've fallen in love with halfway around the world...  Blessings--Doreen

Hi Doreen,

to the site.

You are really a great person! that you want to adopt a child that requires special care. I salute you!

From what you have stated, she does sound like Thal. Major (until confirmed). As far as the life of a Thal. person and his family is concerned, then it really depends on how well you take care of it.

If you have access to good medical facilities and you provide your child with punctual treatment, then there is nothing to worry about, in the beginning there might be some difficulties but as the child grows and you get more experienced over it; then eventually it becomes a part of your life.

How Thal. effects the child really depends on the severity. If her Hb gets too low she might show signs of weakness, lack of concentration and paleness etc. This can be prevented by always keeping her Hb in check and not let it go too low.

Desferal is the most toughest challenge for small children and the parents. Children get frustrated with needles pricking everyday, but getting complications from Iron overload is more worse than daily needles. So, you have to do it whether you like it or not as you want the best for your child.

There are alternative pills to it like Exjade and I sure hope that it is available to you so that you won't have to undergo to the trauma.

Apart from that you don't have to worry about anything else. Just don't give her a diet that has too much iron in it.

Please feel free to ask more questions that you have in mind.

God Bless you for the wonderful deed that you are about to do.

Take care, Peace!

Hi Doreen,
There should be more people out there in this world who are like you who are willing to adopt children! I have Thal major & im from sydney Australia.The little girl who you are trying to adopt she can lead a very normal life if she is well taken care of and takes her treatment as we are supposed too.This means every 4 weeks having a blood transfusion & depending how old she is taking nightly desferal infusions 6 nights a week over a 10 hour period.If she is 6 years old or over she may be able to take a new oral tablet that is out called exjade which you dissolve in juice & drink it once a day requiring no needles.Dont let thalassemia put you off adopting her,everyone has something in life.I hope this helps.

HATS OFF TO YOU DOREEN.

ZAINI.

Hi Doreen and welcome,

I hope some parents respond to this post, so you can get some idea what it entails to raise a thal child day to day. I don't really feel qualified for this. I can tell you that many thals live fairly normal lives, with education, careers and families. The founder of this group even played little league baseball.

What part of the US do you live in? Location is very important as far as where the best thal centers are. This is an important factor to consider.

In the US, the oral iron chelator, exjade, is approved for ages two and up, so it may be possible that a child starting treatment in the US today might never have to use desferal. The outlook for thals born in areas with good care available, is much better than in previous decades. The comprehensive care programs available at the better thal centers along with a safer blood supply, have made it possible to change the classification of thalassemia from an eventually fatal disorder, to a chronic manageable disorder. There is much research into both treatment and possibly a cure, besides bone marrow transplant, and there is much reason to be optimistic about the future for thals.

Parents...what is life like raising a thal?

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

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

Hi Eliza,

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!

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?

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.

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. 

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

hi kim,

What do you mean by "HAD" 2 children. If u dont mind me asking?