Trying again to adopt Thal (+heart condition)

Hi All...Back in June, I found your site after falling in love with a picture of a child in China with a condition I'd never heard of...I felt so drawn to her desipite the obvious difficulties of her condition and wanted desperately to adopt her.  However, at that time I had a very limited medical insurance plan and they would have cancelled our policy if we had brought in a child with this condition.  Another family petitioned for her and will be bringing her home and that brought me much comfort in knowing she would be in a loving home and receiving good care in America, but my heart just ached because I felt like I had learned so much from you all and I was so ready and willing to undertake this lifelong but manageable condition.  I watched and prayed over you and your site for the months that followed and just didn't understand why I had felt such a strong connection to you and to the cause of Thal if I wasn't meant to adopt that little girl...God answered that question for me shortly after.  This Fall (now with a new job and FABULOUS insurance), I unexpectedly again felt drawn to and fell in love with yet another picture of a child in China in need of a home.  As it turned out (and I didn't know it when I first saw and felt drawn to his picture) he also has Thal.  I've taken it as a sign that I needed some preparation time back in June to understand and embrace the diagnosis and although the time wasn't right for that child, God knew I'd later embrace a second child with not only Thal but also a heart condition (Atrial Defect)  If I'd seen both conditions before knowing any better, I probably would have been scared off.  But God, in his great wisdom, has softened a spot in my heart not only for the orphans of the world, but for the cause of Thals.  I share all that to say that I'm with you, I'm praying for you, I'm thankful for your knowledge and wisdom that you so willingly share and I'm going to need your help in the coming months and years!!  We have just sent our initial letter of intent to China to ask permission to pursue his adoption and so it's not guaranteed at this point, but I just feel so strongly that he's meant for us.

I would like to ask if any of you have the added bonus of dealing with a heart condition in addition to your thalassemia??  I've consulted a local hematologist and he seems to think the Thal is the more significant concern and the heart condition will be easily treated once we get him home.  (The Dr. suspects from the limited medical reports we've received from China that his condition is Intermedia, but he's just 2 and they are already transfusing him, so it could be major.) Can you think of any reason why Thal would interfere with being able to treat the heart condition?  It may require surgery (possibly non-invasive, but maybe open-heart, YIKES!) 

At any rate, we're proceeding and are confident that God is going before us and will make a way and will support us through whatever He has in store for us and our son!  I'll be praying not only for our child but also for all of you!!  Love, Doreen

Hi Doreen,

Surgery is very common for many thal-related problems, so I would say there is nothing about thal that would preclude surgery. I agree that the heart condition would be much more easily treated here than in China (especially for a child in an orphanage, who would be unlikely to get appropriate treatment). You will be doing this child a tremendously good thing by adopting him and bringing him where he can get proper treatment for both thal and the heart condition. Thals endure many surgeries, such as gallbladder removal and splenectomy, so rest assured that the surgery, if needed, shouldn't be affected by the thal.

Our member Emommy is currently in the process of adopting a second thal child (also from China) and she may be able to give you some tips. (If you run into any resistance from the Chinese adoption agency, there are some rules in China concerning what is the best course for a child to have the best life, that may supersede some of the adoption rules. Contact me if you need any help with this). We, as a group, are always here to lend our help, so be assured you will always find support.

Good luck and let us know if you need any help in any way.

Hi Doreen,

I'm touched and speechless after reading your post.

All I can say for now is that may God Almighty shower His countless blessing on you and everyone like you and guide you on the straight path. Amen!

Hi Doreen,

I can't explain in words what i am feeling, it's really kind of you to adopt a thal patient with heart condition, i hope and pray that i'd be able to do the same someday,providing an orphan child a well protected and well treated life and love,you must be great to do such a thing.

May GOD bless you.

ZAINI.

Thank you Andy, Sajid, Zaini for the kind words--I feel like I know you already.  Please know that I'm not looking for praise or a medal or anything, I just want to give this little guy a loving family and a chance for a better life---who wouldn't want to do that?     But thanks, nonetheless...I'm sure when this gets difficult, it will help to remember that it's an important and worthwhile mission of love that I'm on!!

I have a question...I've seen some posts about causing an intermedia child to become transfusion dependent...How long would that take?  This child's been transfused now for a little more than a year (I can't get specific records on frequency, but the report I have says once a month or longer depending on his physical condition)  and it will probably be 9-12 months longer until I can get him home.  What's the likelihood that this will be a problem if he truly isn't 'requiring' the transfusions as often as they are giving them?

THANKS!

A year of transfusions is enough to cause the bone marrow to shut down and make the child transfusion dependent. If the child is intermedia, it may be possible to slowly increase the gap between transfusions to see how low the Hb drops. If it stabilizes at an acceptable level, transfusions can be stopped. Once the bone marrow becomes active again, hydroxyurea might be used to raise his hemoglobin level. At this point it is all speculation until we know what the child's true status is. Mis-diagnosis is common and intermedias are sometimes transfused when it could have been avoided. Thorough testing, including DNA tests, can shed much light on this.