When 2 thal minors want to have children.

Hi Jemma, its interesting story to hear and at the same time its sad you have lost your second child while they were doing a procedure. I would like to ask you whether they explained you how this child died while doing CVS. As there is always this risk there can be fatalities while doing this procedure either introducing infections or physical injury to fetus. But the incidences’ as far as I know it’s rare. Being a person interested in this area of medicine, I am curious to know whether there was any injury that leads to die this child.

As many of you have said its not an easy decision to make, to go for medically terminate a pregnancy. However as Andy said due to the consequences and burden that thal major kid itself has to go and the concerning family has to undergo. In my opinion it’s a right decision to take, as Miaki said I don’t think by taking such a bold decision we are doing anything against Mother Nature, or rather I feel it’s a decision to take to build a healthy generation.

Many of us thal majors may be the victims of either lack of knowledge of our parents about the technologies and the pathology of thalassemia. Or it may be their own decisions as per either strong beliefs’ or faith. What ever it is, since with the help of medical knowledge there is this chance that we can avoid getting thal majors, I would say it’s a right decision every one should take.

Hi Jemma,

Firstly I would like to ask you, what was the reason for you to post your story on this forum?  Did you want to meet people with Thalassaemia Major?  Did you want to gain information? Did you wanted understanding and sympathy?  Or did you want people to approve your decision on aborting a baby which has Thal?

I was a little disheartened when I read your post and read your words in RED that you wanted guarantee from Miaki and myself that your child would not hate you from bring them into the world.  I’m obviously not god so how can I possibly guarantee you anything??  I can say I believe your child definitely wouldn’t hate you as you had elected to give you child the precious gift of life.  I don’t envy you your decisions as you obviously don’t have a very supportive partner and family and you also appear to lack convictions and inner strength.  If one day you finally come to understand what we are trying to say to you, and become a positive person then maybe you will find love for yourself.  Maybe you could also find this love and strength for any child that you bring into this world, be they Thal Major, Thal Minor or Non - Thal?

I couldn’t believe that you gleaned something negative from Miaki and my posts.  Did you do this to reinforce a position you have already taken in your heart?  Did it make you feel better from turning our positive post into negatives?  If it did then good on you. You succeeded in upsetting me as you obviously view my life and that of other Thal as somehow inferior to your own “normal” existence.

Miaki is right about changing the subject to 2 people wanting a child.  A child is brought into this world needing unconditional love.  Love has no barriers and no conditions.  Maybe I was blessed that both of my parents didn’t know about their Thal Minor but knowing my parents, I don’t think they would of aborted due to their religious beliefs and strong convictions in the fundamental right to life.

Your comment ‘How about if my child resents me for bringing s/he into this world when I did have an option not to?’  If you raise your child with love and respect then you will not have a child that resents you.  You will not even have a child that questions their condition in a negative way. Children are not dumb, I knew my mother felt guilty sometimes about bringing me into this world, but that guilt is her own insecurity coming through and is definitely not due to anything I have said or done. 

Perhaps instead of planning to have another child, you may need to get counselling on baby Ethan, I have this feeling that you are blaming yourself for even thinking about aborting prior to the babies birth.  Once you get counselling them maybe think about another child.

Yes! Life is a struggle.  Everybody has huge responsibilities these days with family, work, finances and social expectations. Life is a ‘struggle’ for everyone.  Not just people with Thal Major.

Just remember this is a Thal Forum,  a forum for support and to have an open mind to understand everyone’s experience.  So if you want to turn our positive post to a negative to suit your self then do in your own space.  If your looking for someone to condone your decision on aborting a Thal Major baby you will not be getting it from me because, surprise surprise, I just happen to be a person with Thalassaemia Major.

I would just like to finish by thanking my parents for allowing me to be all that I can possibly be,  and for not abandoning my life on the possibility that I may not express due gratitude to them for it later on???  Your children may indeed go through periods where they dislike you for one reason or another Jemma, but letting them be born to express those emotions in the first place would not be one such reason.

And on that note I would like to thank my parents for bringing me into this world and allowing me to be who i am today. I would also like to congratulate all the other parents on this forum for being wonderful carring parents, for their  love and determination and for showing their support on this forum.  . . You should all be proud and we are all proud of you.

  .

I think this is a personal matter and you should not be concerned if someone has an opinion opposite to that of yours.

Some people won't go for another child once they have a Thal-major (or choose the aborting option) while I even know a family that has 4 Thal-majors in a row! When asked they simply reply that the soul had to come so it came and we can't change it. What will happen, will happen as there is no telling what the future holds.

Dear Everyone,

My reason for posting this note in this forum was to so i could be understood and to read about any one that was faced with the same issue as me.  I did not mean to offend any one or upset anyone but simply writing in here my absolute true thoughts and feelings about this issue.  I could have lied all along.....I could have wrote that yeh your right i am going to give birth to a baby Thal major or minor or no thal.  But this would not have been truthful and i would have lied to myself and to everyone who has read this.

It is against my religion to abort and this is why i am having a very difficult time with this.  When i found out about our circumstance i wanted to have a child regardless...my husband wants me to abort a thal major child...After lots of talks with proffesional and seeking different advice i too decided it is probably best to terminate...I am not a  hard hearted person.  My heart is telling me not to do it and my mind is telling me its for the best.  i have to also respect my husbands wishes as well when making this decision.

I am so scared, afraid, frustrated, angry.  I dont think that a thal major person is any different to me...i think we are all the same and i am glad and happy for you for making the most of life.  And i admire your mothers for bringing you into this world that was her personal decision just as this is my personal decision.
I just wanted to meet people in the same boat as me.... thats all.... to offer me support.

Everyone has different views about different things it dosent mean that one person is right and the other is wrong.

Jemma :hug

Dear Mustho,

Hi, my baby did not die because of the CVS test.  He died a couple of days before.  But they have told me of the risks but they said it was less than 1%.

Lastly i would like to thank you for your posts it gave me some comfort.

Jemma

My reason for posting this note in this forum was to so i could be understood and to read about any one that was faced with the same issue as me.  I did not mean to offend any one or upset anyone but simply writing in here my absolute true thoughts and feelings about this issue.  I could have lied all along.....I could have wrote that yeh your right i am going to give birth to a baby Thal major or minor or no thal.  But this would not have been truthful and i would have lied to myself and to everyone who has read this.

Jemma,

I have followed this thread with some interest because, as Andy mentioned somewhere else, abortion vs lack of care for a thal child is a very real issue in India. But, that's really marginal to my interest. My main interest arose from the fact that I have had hearty conversations with myself when I was 12-16 yrs, and went through some really tough times, on what constituted life and what type of life is worth living and whether it would not be better not to live, rather than live as a thal ...... today, I am 36, over that phase but that phase was tough ....... still, now I believe in lights at the ends of tunnels!!

However, coming back to your point above ...... you really should have gone through the group objectives and posts first before posting, as this is a support forum for thal people. Majority of the people posting here are Thal majors who are living their lives as Thals. For you to come here and wonder whether you should abort or not is very insensitive. You may be posting "your" truth, but you are being insensitive to everyone else on this forum. And, that is what offended Flower and Miaki and I would imagine many others, who have not written back to you. We can only answer your question with our experiences, but that is not the answer (support) that you seek ..... and, the answer that you seek you will not find here because we are the survivors, and we are hearty, happy survivors, in most cases!

It is against my religion to abort and this is why i am having a very difficult time with this.  When i found out about our circumstance i wanted to have a child regardless...my husband wants me to abort a thal major child...After lots of talks with proffesional and seeking different advice i too decided it is probably best to terminate...I am not a  hard hearted person.  My heart is telling me not to do it and my mind is telling me its for the best.  i have to also respect my husbands wishes as well when making this decision.

I really, really do not understand then why you wish to have another child under the circumstances? You already have a healthy baby. You are being torn apart by whether you want to abort or not, if the child is thal major. You don't want to spend the money on the IVT. Don't you think that you will damage even a "normal" baby with all your stress and anxiety during the pregnancy? And, are you aware that the CVS test is also not 100% accurate? It can give you a false negative - what do you do then? And, if you still want another child, why not adopt as Shikha suggested earlier? And, I can't imagine your husband forcing you to have another child under the circumstances. Maybe, you should talk to some proper counsellors, which we are not. Because, although you say that you have decided to terminate, based on your past posts, it would appear that such a course would still scar you immensely.

I just wanted to meet people in the same boat as me.... thats all.... to offer me support.
Everyone has different views about different things it dosent mean that one person is right and the other is wrong.

Jemma :hug

And, believe it or not, I fully agree with your last statement.

Take care now,

Poirot

In my opinion it’s a right decision to take, as Miaki said I don’t think by taking such a bold decision we are doing anything against Mother Nature, or rather I feel it’s a decision to take to build a healthy generation.

What ever it is, since with the help of medical knowledge there is this chance that we can avoid getting thal majors, I would say it’s a right decision every one should take.

Interesting viewpoints, Mustho.

Where do you draw the line when you start genetic cleansing?

In this specific case, since the Minors are the ones really at fault, shouldn't we start with them, as Miaki posted earlier?

So, here's what I propose, based on your contruct:

1. Test everyone in target communities for the thal gene
2. Everyone with the minor gene to be segregated and sent to labour camps
3. They can either be used as a source of community labour (no breeding allowed) or sent to gas chambers
4. All new born babies of target communities to also be tested
5. Repeat step 3 for any minors.

Glory be, we now have a thal-free world. Time to start on diabetes.

Wait a minute ..... is the Third Reich back??

You really should think through what you are saying, Mustho.

Cheers

Poirot

Have you considered cloning someone who is perfect..But then again, is there such thing as perfect?

Ohh!!!!  I get it now .........  If you dont have the same view point as us then dont bother writing in here......Right...

I came on this site cause i am thal minor and because i have an issue and there are so many people in this world with this same problem.....This is happening every day to other couples.....now whoever wants to live in LA LA land can do just that.  You dont like what i write......EASY dont read it....... And for those who are in this predicament please write....

Thank you

Hi Jemma, dont take pretext of what others has written, here we all are either thalassemia patients, friends, and well wishers like my self, I am a Thalassemia Rsearcher. There are so many experts in this forum who can help many ways to impart knowledge.

Andy the moderator of this forum is doin super job, to geather bits and pieces of information from here and there and bring in this forum.

When ever you feel not happy about the information ask more, from others ,may be here or may be from other sources.

The important thing is to understand the situation and take right decison at right time.

Jemma,
I agree completely with what Mushto said. You are feeling a lot of pressure to have children and this is something NO woman should do until she knows in her heart she is ready and knows what she wants.
Please never feel pressured to have kids. It is a disservice to you and also to any child you might have under those circumstances. Please tell your husband you wish to wait until you are sure how you want to proceed. His pressuring you to abort if it's a thal is doing much harm to you emotionally and you need to find a way to let him know that without upsetting your marriage.

You will know if you are ready to try again and if you are willing to risk having a thal major. I really think in vitro may be best for you and yes it does cost, but care for a major would dwarf those costs.

I hope you realize that we are here to support each other. Your situation is not an easy one and I hope we can all appreciate that having lost one child greatly affects your spirit. Unfortunately, I have heard from many thal minor women who have lost children. It is not uncommon and is so hard to deal with. We'll try to help you find the strength you need.

Ohh!!!!  I get it now .........  If you dont have the same view point as us then dont bother writing in here......Right...
I came on this site cause i am thal minor and because i have an issue and there are so many people in this world with this same problem.....This is happening every day to other couples.....now whoever wants to live in LA LA land can do just that.  You dont like what i write......EASY dont read it....... And for those who are in this predicament please write....
Thank you

No, Jemma, you misunderstood what I was saying completely. This is a support forum for Thals. Clear? Most of the people on this forum are Thal Majors. So, if you pose a question on this forum, we will answer/comment from our experiences .... as Miaki and Flower have done so eloquently. If you do not like the answers, that is not OUR fault. This is NOT an abortion support forum.

We think we understand what you are going through, and we are trying to provide you with our real life experiences to help you deal with your issues. But, this does not seem to be what you are looking for. To a disinterested observer like me, it seems to me that you have already taken a decision to terminate a pregnancy if the CVS test says that the foetus is Thal major. So fine, it is your decision ... go ahead with it.

But, at the same time you WANT support from us, thals, to validate your decision. How can that be? How can you ask us, survivors of thal, on whether you should abort or not? We are bound to say NO.

Now, do you understand, how quixotic your questions are?

Poirot

I think something Jemma said has been missed.

It is against my religion to abort and this is why i am having a very difficult time with this.  When i found out about our circumstance i wanted to have a child regardless...my husband wants me to abort a thal major child...After lots of talks with proffesional and seeking different advice i too decided it is probably best to terminate...I am not a  hard hearted person.  My heart is telling me not to do it and my mind is telling me its for the best.  i have to also respect my husbands wishes as well when making this decision.

Jemma is having a very difficult time with this, as her husband and medical professionals are pressuring her to make a choice she abhors.

I am saying please cut Jemma some slack and give her some support. She has actually found people here who agree with her but that's hard to tell from the tone of some posts. Keep in mind that she has also lost a child and only those, like flower, who have experienced this, can know what trauma that involves. Jemma really does NOT want to intentionally lose another through abortion.

Let's understand her whole situation and please do not judge her. Walk a mile in her shoes and then offer some true support instead of outrage at the questions about abortion. I know there is much emotion about the abortion issue and for those who care to know, my own view is it is a woman's body and her decision to make and I don't think I or anyone else should be telling any woman what is right or wrong concerning abortion. But, I am a libertarian and don't think government or society should dictate what any of us do with our own bodies...and to use a phrase I don't much like since some guy at another forum once used my words almost verbatim as his own and then used this phrase...that's my two cents.

Andy,
     You are an amazing person of extraordinary compassion. Your perception of what Jemma is going through is what I feel also. I understand what others are saying, but ultimately it boils down to being compassionate for a person who is doing some soul-searching. We can give our stories, but judging others is counterproductive. Plenty of the time people usually do a good job of judging themselves.

Jemma,
     Good luck in your search for peace of mind. I agree with Andy that a woman should make decisions concerning her body. What is right for you will be right for your child, regardless of circumstances. Or, if you decide to abort, that's OK too, because that is what you felt was best to do. People can only do what they feel is right in their hearts, and only they know what that is. There has been information and opinions from both sides of this issue given - but which path you decide to take will be fine, because you followed your heart. I'm not saying it's easy to do this, but if you strip away all the outside influences, what is your gut instinct telling you to do? Listen to your own voice for a decision you can live with.  My thoughts are with you.   

Thal majors, 
     I applaud you for your strength and tremendously strong spirits. You are special people who have been greatly challenged. You have met and dealt with that challenge in admirable ways, even though it hasn't been an easy road to go. You have surpassed expectancies that have been made for you. You are people who inspire others to try harder. You have made me feel better by seeing how strong you are, and from your support - thanks!  Jean