Check baby for Thalassemia

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Check baby for Thalassemia
« on: June 24, 2008, 09:08:28 AM »
Hi Everybody,

I just came to know about this site. Actually just last night I came to know I'm Thalassemia minor.

Please let me tell you my situation so that you can help me.

My wife is pregnant and was found Thalassemia minor. Then I tested myself and was found Thals minor too. My wife is in 5 months of pregnancy (22 week). We went to a Haematology consultant who is suggesting to check the baby for thalassemia major.

We live in Bangladesh. As per the consultant, there is no lab here in Bangladesh where we can test this. So he is advicing to go India as India is our neighbouring country.

From today morning, I'm taking the perparation to get visas and all the formalities. I've many questions in my mind right now. I'm trying to get the answers from Internet but seems like this is a very good site and hopefully I'll get all my answers from this single source. Please dont mind if I'm asking basic questions. Hopefully you'll understand I'm bit frustated with the situation as I thought I've ROYAL blood (?). Also because of my ignorance, our child is in danger.

Qs:

1. What type of test will be done to check whether the baby is major? Can anybody tell me or give me some link where details can be found like how the samples are collected, how painful is that, name of the test etc etc

2. As we'll go to Calcutta (a city of India), whether they are good for this type of testing or I should go to any other city like Chennai. Can anybody suggest any good testing center? Our consultant could only provide one name "RANBAXY" till now. He is trying to get more info. Can anybody tell me how is this center and whether they've any branch in Calcutta. Also can they
collect the samples by their own or we've to go some medical center to give the samples.

3. How long does it take to get the result of this test? If it takes much time like 2 weeks then is it possible that we give the samples and then come back to our country. Then the center will send the report through email/courier if I pay the money.

4. The most important question, do we still have time to do abortion as its already too late and by the time we'll get the result, it'll be more advance stage. Can anybody give some honest suggestion?

These are the questions I could not recall right now. I'll ask more questions if I missed something important. Thanks in advance for the answers.

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Offline §ãJ¡Ð ساجد

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Re: Check baby for Thalassemia
« Reply #1 on: June 24, 2008, 11:45:41 AM »
Hi,

The test is called prenatal diagnosis and more specifically C.V.S (Chorionic Villus Sampling). It is a small procedure involving collection of cells surrounding the baby.

I hope your child comes out normal.

Normally abortion is not advised at 5 month.

Wishing you all the luck.
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Offline Narendra

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Re: Check baby for Thalassemia
« Reply #2 on: June 24, 2008, 01:53:54 PM »
Hello,

I am surprised there is no center in Bangladesh that does the prenatal testing for thalassemia. Did you get in touch with Bangladesh Thalassemia Foundation?

We have a link at:- http://www.thalassemiapatientsandfriends.com/index.php?topic=112.0 which had information on bangladesh thal foundation and I see different contact numbers on the bangladesh thal foundation website :- http://www.thals.org/en/contact-us/view.html
Quote

Bangladesh Thalassemia Foundation   
 
44/2, Chamelibagh, Shantinagar 
Dhaka – 1217, Bangladesh 
Bangladesh 

  info@thals.org
  88 02 8332481,01190840191 
  88 02 8931139   

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Offline Narendra

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Re: Check baby for Thalassemia
« Reply #3 on: June 24, 2008, 06:18:57 PM »
Information on Prenatal testing
From:- http://www.thalassaemia.org.cy/pdf/What%20is%20Thalassaemia.pdf

Quote
Testing a foetus for thalassaemia

There are three types of tests that can determine whether an unborn child has thalassaemia:
(i) Amniocentesis: Amniocentesis is performed in the second trimester of pregnancy, after about 15( 18-22) weeks' gestation. Using ultrasound as a guide, a trained obstetrician insertsa very thin needle through the mother's abdomen to withdraw 2-3 tablespoons of amniotic fluid. The foetal cells (cells from the unborn child) present in the fluid arethen analysed in the laboratory to determine whether the foetus has thalassaemia.This test is used when the pregnancy is far advanced. It poses no significant risk to the mother. However, the test may cause a miscarriage -- from a few days to a fewweeks after the test.

(ii) Cordocentesis (sampling of fetal blood)Under ultrasound guidance, a fine needle is inserted through the abdomen into thefoetal unbilical cord. About 2-3 ml of blood is aspirated and foetal blood isseparated out in the laboratory. In skilled hands 100% pure foetal cells are obtainedfrom the first attempt in the majority of cases. Causes of failure in obtaining purefoetal blood include early gestational age, less than 18 weeks, maternal obesity andposterior placenta. Early gestational age is also the most important cause ofoccurance of serious complications in cordocentesis. (top fig p.127)Globin chain separation with gel electrophoresis is the usual laboratory method ofdetection. Early and specific diagnosis by molecular methods has almostcompletely replaced cordocentesis which is now mainly indicated only in pregnant patients who report late, in those in whom CVS is inconclusive and when previousstudies of at risk couples are not available.

(iii) Chorionic Villus Sampling (CVS)CVS can be performed somewhat earlier than amniocentesis, at about 10-11weeks' gestation. Using ultrasound as a guide, the specialist obstetrician removesa small sample of the chorionic villi -- cells that contain the same genetic information as the foetus and which will eventually form the placenta. The cells are removed either by a thin needle inserted through the mother's abdomen(transabdominal) or a thin catheter inserted through the vagina (transcervical). The cells are then analysed and a diagnosis made. (fig p128)As with amniocentesis CVS poses no significant risk to the mother. However, there is again a small risk of a miscarriage. If a miscarriage does occur, it can be difficultto know whether it was due to CVS, because many miscarriages happen naturallyat around 12 weeks of pregnancy.There may be an increased risk of the baby's limbs being malformed if CVS isdone very early in pregnancy - i.e. before the 8th week after the last menstrualperiod. However, there is no evidence of an increased risk of any malformation when CVS is carried out after the beginning of the 9th week after the lastmenstrual period. This is why the procedure is generally carried out after the beginning of the 10th week after the last period
« Last Edit: March 04, 2009, 04:19:46 PM by Narendra »

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Offline Narendra

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Re: Check baby for Thalassemia
« Reply #4 on: June 24, 2008, 06:29:44 PM »
I found some information on the net for doctor's in Calcutta who might be able to help with Genetic Testing

From:- http://www.indiaspace.com/pages/genetics.htm
Quote
Dr. Amit Chakravarty
M.Sc., Ph.D., M.S.C.G.(U.S.A.)
Director, Med-Gen Diagnostic & Research Centre Pvt. Ltd.
Visiting Consultant & Incharge of Genetic Centre : Peerless Hospital & B.K. Roy Research Centre, Calcutta

Re: Check baby for Thalassemia
« Reply #5 on: June 24, 2008, 06:34:35 PM »
Hi Sajid,

Really thanks for the wish. We really need prayer from everybody.

Hi Narendra,

Really thanks for the important information and all the efforts. Suddenly I became excited on the idea that probably we dont have to go to India.

I called the person at the cell number provided by you. After some conversation we came to know he is the same person our Consultant has contacted also. He told me we've to go to India. He is trying to get replies from his contact in India whether this prenatal test can be done in this stage. He'll let me know as soon as he get any information from India.

The person told me its no use now to test as we cannot do anything after getting the result. But I'm determined to know. I cannot wait for another 4 months with this uncertainty. From yesterday, I belive my age increased 10 yrs. I am wondering how come I didn't do these blood test earlier. Infact how come I was completely unaware of such desease.

Thanks again.

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Offline Zaini

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Re: Check baby for Thalassemia
« Reply #6 on: June 25, 2008, 06:29:38 AM »
Hi DadThal,

Welcome on the forum,i am really sorry to hear about your situation,i wish and pray that your baby will be healthy.
I went through this test myself before my second baby was born,it's done here in karachi in couple of hospitals,one is AGA KHAN HOSPITAL,and other is PNS Shifa,a navy controlled hospital,as Narendra gave you the information,a needle is inserted in mother's abdomen to take out the sample,it's not VERY painful,and patient won't feel a thing if given local anesthesia,after the test patient is advised to be on bed rest atleast for three days to avoid misscarriage,and given painkillers for any kind of pain.
The test was done when i was about 11-12 weeks pragnant.
Hope this helps,feel free to ask any questions.

ZAINI.
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Re: Check baby for Thalassemia
« Reply #7 on: June 25, 2008, 08:54:55 AM »
Hi Zaini,

Really thanks for the important information. You've given some required info. Till now I was thinking to go there, stay in a hotel, provide the samples and come back with/without the result. But as you're telling 3 days bed rest is required, so I believe we've to admit in the Medical center. Can you please tell me how much time is required to get the result? Also will it be harmful for the baby/mother to fly after the test while coming back to our country (ofcourse after the 3 days rest).

Re: Check baby for Thalassemia
« Reply #8 on: June 25, 2008, 11:41:34 AM »
To update you all, I called the lab named "SRL RANBAXY" in India to know whether they do this test or not. The customer represetitive told me they dont take the samples, they can only test it. The procedure is

1. First we've to go to the lab.
2. They'll give us instructions what to do.
3. We'll find a doctor who will take the samples and will fill up a form provided by the lab.
4. The lab will test the samples.

The representitve told me they dont recommend/refer any doctor. We've to find one by our own. I dont know how I can do that from here. If anybody can help with a doctor's name who is in Calcutta and also dependable, please let me know. Thanks.

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Offline nice friend

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Re: Check baby for Thalassemia
« Reply #9 on: June 25, 2008, 01:18:39 PM »
Hi dadthal :
welcome to Thalassemia patient and friends ..  :welcome
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Re: Check baby for Thalassemia
« Reply #10 on: June 25, 2008, 01:35:00 PM »
Sometimes I feel I've already made two instances of me.. ???

One is insisting to go India as soon as possible and take the necessary actions if required (you know what I mean).

Another one is telling why going through all these hassle and pain. Lets leave the whole thing in the hand of Allah. 75% chances are the baby will be OK. but the problem is me and my wife is very unlucky in lottery. We always get the worst prize in any lottery. but whatever, if we get a thals major baby, we'll take care of him/her till we die. Science is progressing and who knows there will be a cure very soon. But again thinking how much pain s/he has to go through..I know this is not the right place to ask this question but can anybody tell me how tought is the life for thals major?

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Offline jade

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Re: Check baby for Thalassemia
« Reply #11 on: June 25, 2008, 02:00:06 PM »
Hi Dadthal

Welcome to the forum. You will get so much information from the members here. 

Quote:'Also because of my ignorance, our child is in danger."

You should stop feeling guilty.  You are not at fault.  We carry so many things in our genes, still it is not our fault.  it is our destiny.  When we know we deal with it, this is what you are doing.  You are courageous. You should keep yourself fit for your child and for your wife.  She will need your support and love.

May Allah give you a healthy child.

Take care and good luck.

Jade

Re: Check baby for Thalassemia
« Reply #12 on: June 25, 2008, 03:13:32 PM »
Hello,

I completely understand your frustration at this time. However, please consider following facts:

-Pregnancy at 5 months is safe and an abortion at this time is not safe for your wife.
-You and your wife are both thalassemia minor and have a 25% chance of thalassemia major child.
-Thalassemia is a manageable condition and with proper care the patients live normally.

Don't react as a knee jerk reaction right now, take your time to find the right doctor and test center before you go for any test. There is a good chance of 25% your baby will be completely health and 50% chance the baby will be thal minor just like you and your wife.

Think carefully and act rationally.
Regards.

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Offline Zaini

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Re: Check baby for Thalassemia
« Reply #13 on: June 25, 2008, 03:34:53 PM »
Hi DadThal,

As muslim you must believe that prayers can change everything,my doctor told me that there is a 2% chance of mistake in this test,internationally accepted,and in your case you have crossed the time limitation,but still if you wanna do the test, why don't you come to Pakistan? meet dr rahat qureshi in AGA KHAN hospital,she'll inform you of the procedure,i can even book you an appointment with her if you want to,and i'd love to help you and go with you to the hospital even,but it depends on when are you coming, coz i am leaving the country on friday and i'll be back till 9th july.
About the results,i think it comes with in a month.
Plz feel free to contact me in PM if you want to.

ZAINI.
^*^Xaini^*^

Re: Check baby for Thalassemia
« Reply #14 on: June 25, 2008, 06:41:47 PM »
Hi Everybody,

Thanks for all the support you've given to us. Today after getting back to home, I sat with my wife and discussed what should be done. We agreed we should continue unless somebody tell us it'll be a measurable life for the baby. We also agreed we'll not go for the prenatal test as it has some risk of miscarriage. We'll assume and hope that we're having a normal baby.

Just after we take the decision, I got Online to see whether anybody provided any important information or not. I got 2 valuable replies which clear our mind.

Hi Canadian Family,

Thanks for your valuable information. Infact your 1st point is enough to take the correct decision. I'll never do anything that can do any harm to my wife. Point 3 is also very important as now we know the patients will have a near normal life. You can be sure we'll act rationally.

Hi Zaini,

Thanks for mentioning the 2% chance. We'll not take that chance but once we go through this situation, hopefully we'll come to meet you at Pakistan. We're really touched by your mail.

Now I've one question to everybody. Actually I've read too much stuff in one day regarding thalassemia. So cannot remember properly but I can recall one article where it was mentioned that its not very easy to check the new born baby has thalassemia major or not. Can anybody give some light on this? I mean, now as we're not going for prenatal testing, our first chance to know whether our baby is thalassemia major or not will be after delivery. So can we check the baby right after the delivery or we've to wait for some time. Please let me know if you know the answer.

Thanks again to everybody.

 

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