Intro and adoption question

Hi guys!  We are first-time post-ers to this forum.  My husband and I have been trying to gather as much information as we can about thalassemia because we are considering adopting a baby from Thailand whose mother had beta thal.  We do not know how severe she was or if the father had it or was a carrier.  We don't know if the baby has it or not but he is now 10 months old and we are hoping that if he has it, or at least if he has a more severe form, that he would be showing some symptoms by now. Does that sound accurate? Next week we will be receiving all of his blood work and developmental information.  What do you suggest that we look for in this bloodwork?  Is there a way to know his status without having genetic testing (because the orphanage where he is will not provide that)?  Can you tell me about the financial commitment involved in having a child who requires frequent transfusions and treatments?  How well does insurance cover these expenses (we consider our insurance to be very good)?  Also, we have another young child in our home who is relatively healthy.  From your experiences, what is it like for a healthy sibling to grow up with a child with these kinds of needs? I apologize if my questions seem dumb, we are trying to gather as much information as we can so we can make an informed decision.  We are not set on denying this child if he ends up having beta thal - but we want to be as prepared as possible. 

Thank you so much for all your help.  It is wonderful to see a site dedicated to providing "real life" information and not just generic information about a medical diagnosis.

Diana     

Hi Dianna.
Welcome to our site .I hope we can be of need to you.
I feel compel to answer your question and may be ease your doubt about the above topic.
First thing I would  like to be, that  perfectly imperfect child in the orphange, waiting for that perfectly imperfect parents to adopt me.We all need love, nurture and acceptance to thrive.I made this point because we are all perfectly imperfect.No one here, will be able to tell you how much it will cost to raise a child with Thalasemia as we are all individual with individual needs.It all depand upon whether you and your husband both love this child and you both can afford to give her the best she deserve , only both of you knows that.
In regard to your other child I dont thing she will get infected, maybe jealous if you spent most of your time with the sick one, but on the other hand he or she might be gratefull to have a sibbling, again I stress it is how we deal with our issues, each one of us knows what is best for us .
Please remember this child is as good as the next one, its not his or her fault if she was born with a genetic disorder.I hope you are brave and have the guts to  think outside the box because that what's take to accept what we cannot change.I will pray you both have proper guidance .
As a matter of fact, this is solely my point  of view ,maybe some other members have a different view and can also help you find peace of mind on this subject and make the right choice.
Kathy.

Hi,

At 10 months it will show from his blood reports if he is more than a trait carrier (minor). The higher than normal levels of fetal hemoglobin will be apparent if the child is a major or intermedia. It may also have begun to show in a slower than normal development or even in a failure to thrive diagnosis.

You should contact your health insurance provider and ask them what the rules are concerning an adoptive child being covered for pre-existing conditions. Just ask generally at this time and put it in terms of considering an adoption and should that be a factor if you decide to adopt a child with any health condition. I don't know if it is treated any differently than if you had a naturally born child who would be covered from birth.

We have checked and our insurance will treat him like a birth child so any illness he has will not be considered a pre-existing condition.  We in no way would turn down this child based money for treatment.  In fact, we are pretty set on accepting him but just want to be as prepared as possible for what could be.  Pray for the best but prepare for the worst, right?  We just found out that this birthmom  was thal minor so we're pretty excited about that.  We would like to have his chart reviewed by a hematologist for interpretation of blood work.   Anyone have any suggestions for who we could contact in the US?  We've heard a couple names but are looking for recommendations.  Thanks.

Where in the US are you located?

Central Illinois

We have the following listing in Chicago at

http://www.thalassemiapatientsandfriends.com/index.php?topic=273.0

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

I think the hematologists there would be able to give you a very accurate interpretation of the test results.

Hi Diana,
     I am also from Illinois, west central area. I am 55 yrs. old and have thal intermedia. I also have 2 adopted children who are now teenagers. It is a good idea to deal with one of the centers specializing in thalassemia because most doctors, even hemotologists haven't had enough or any experience with it. Good luck with everything. Jean

Hi, I am a mother of an adopted thalassemia major child. Just wondering if you've adopted the child, and how is the child. It is always good to know ahead of time if the child has a medical condition. I didn't know my son was ill before I adopted him and we nearly did not save him in time.