Discussion Forums > Thalassemia Major

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

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clarkdl2:
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

§ãJ¡Ð ساجد:
Hi Doreen,

:welcome to the site.

You are really a great person! :happyyes 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!

sydneygirl:
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.

Zaini:
HATS OFF TO YOU DOREEN. :clap :bighug :thumbsup :goodluck

ZAINI.

Andy Battaglia:
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?

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