When 2 thal minors want to have children.

Hi Jemma,

              No one can compel you to stop you from what you feel is better for you. Everyone has his own opinion and it is not necessary that they agree with you.

              A major rule applies to everyone "If they don't agree with you, then it's their own problem."

              I'm afraid you have asked a question to a totally opposite group of people. How can one support abortion if they themselves are alive because their parents didn't opt for it in their case in the first place.

              You should have included the followin in the subject line "A question to Thal-minor (would-be) parents". Unfortunately you haven't found such parents to give you the advice as they will be, somewhat in the same shoes as you. So, it is totally up to you (and your entire family) to decide what is the best option. Can you take care of a child if it shows up +ve on Thal- major. I just hope that you child turns out to be normal so that you don't have to take such dreaded a option as abortion

As much as I want to help Jemma, I think that we also need to paint a complete picture for her. It has been said several times that bringing her case to a group that includes so many majors will only bring the point of view that thals should never be aborted, as they themselves would not be here in that case. That is a very valid point of view but it is not the only point of view that you will hear from majors. It will take a lot of courage for the other point of view to be stated.

There is a point of view we have not heard from in this matter and may yet hear from...I do know people who say they wish their parents had aborted and also knew one woman who has now passed, who was incredibly disappointed by what life brought her. No matter what she did, thal kept her from succeeding. Her short stature told everyone there was something wrong and in spite of a very high intelligence and much accomplishment and qualification, academically, she could never find work. Even her own family never believed in her because of thal and the worst was that she couldn't use desferal, due to allergy and L1 didn't work for her. I was one of two friends she had her entire life. She would not agree with what everyone has said about life as a thal being worthwhile, but that was her view. We may still hear this viewpoint on this topic and I hope we do because those who've had advantages such as good care, need to hear that isn't the case for everyone. When I see these thals in some places give up one after another, I know there's plenty of thals who see no reason to live...I think hearing the other "positive" side can help them but the other side needs to recognize that this huge problem of feeling life is not worth living exists wide scale. Yes, there are thal majors who do feel that their parents should have aborted them.

I think both sides of this should be presented. Life can present many many problems for thals and we are doing a disservice to only present one side. I think that anyone who comes to our group, as Jemma has, needs to be presented a complete picture. It is very hard for anyone to step forward and comment to the opposite of what we have heard already and my friend who passed was one who did at the MSN group, only to feel attacked after she posted. As moderator, I will make sure that both views are heard.

Ok, well, I was trying to keep my mouth shut on this issue, but maybe it's best for me to give my opinion anyway.     Please don't attack me.   

I'm probably one of the only members here with Thal Major that would say I'd abort.  However, this is just my opinion, and what I would do for myself if I had become pregnant with a Thal Major.  Although I've had the best care in my life, with the best family I could ever ask for, life definitely wasn't easy for me or my parents for that matter.  I'm going to be 30 years old this year, and my mother still cries to this day about me having this illness.  She obsesses every day about losing me, or what life would be without me.  That's the life of a parent with a Thal Major child, and it breaks my heart every day.

Am I glad that I'm here?  Yes, I am.  I accomplished a lot in my life, even while going through a lot of issues over the years.  I've been through many surgeries and illnesses due to Thal, and I've had a rough social life growing up because of it also.  I had many friends, but I also had cruel kids calling me names when I was a kid because they didn't know what my illness was about.  It didn't help that I was in the newspaper either, though.   

I always wanted to sleep over my friends' houses, and couldn't because I didn't want them seeing my Desferal pump.  If they slept over my house, I'd have to wait until they fell asleep to put it on.  I just felt like a freak.

As I grew up, it didn't bother me about people knowing anymore, so I openly told everyone.  I'm extremely independent, and never liked when people treated me as if I couldn't do something, so I always made it clear that "I am not physically disabled, just red-cell challenged."   

Anyway, life has been very hard for me, but I still had goals, and still do.  I went through all my years of formal school and then went to college.  I was ill on and off through nursing school, but I fought it and made it through.  I never let anything stop me in my life.  I travel all over.  I love to snorkel and jet-ski.  I love to ride roller-coasters and para-sail.  I went back to school after getting my RN and became a Forensic Nurse, and now I'm going back again to become a Nurse Practitioner.  I'll never let this disease get in my way, unless it renders me bed-ridden, and even then I'd be making the best of it.

I'm telling you this for a reason.  Even though I am happy to be alive, and happy that my parents didn't choose to abort me, if I was in that position today, I would have to abort.  I'm pretty much against abortion, but not when the child or mother's life is in danger.  If I became pregnant with a Thal Major, I would not want my child to have to endure the pain that I have been through in my life, and continue to deal with.  It's physically, emotionally, and mentally disastrous.

I probably seem extremely hypocritical, but I just wouldn't want my child to have to endure the pain that I have dealt with my entire life.  I also think it would be horrible for me to wonder if that child will still be breathing the next morning, after tucking him/her into bed at night.  It would drive me insane.   

I am not saying what everyone should do.  I'm saying what I would do.

Jemma, the decision is for you and your husband.  Think about it really well, and make sure it's not something you will regret (like if you decide to abort).  Life will be challenging with a Thal-Major, but you won't love him/her any less.  It will still be your child.  However, it's going to be difficult for you and your husband as parents who will see this child in pain (getting stuck with needles, etc).  This is a life-long illness, unless they come out with a fail-proof cure.

There are advantages and disadvantages to everything, and unfortunately this also has both.  But the choice lies on you, not anyone else.  We can only tell you what we would do, not what you should do.  I'm not telling you to abort, and I'm not telling you not to.  I'm telling you what I would do.  I've been through enough to know that I'd never want to put my child through it, no matter what I've accomplished in my life.

I pray that you make the right decision, no matter what you choose.  Please, just think really hard about it before making any rash decisions.  It's still a life we're talking about.   :hug

Danielle,

Thank you for a wonderfully honest post on this issue.

Hi does any one know in whihc religion Medically Terminated Pregnancy (MTP) is not allowed, As Jemma has said her religion does not allow her to make that decison. I am not sure which religion she is. As far as I know and which I have learned as thalassemia researcher,there are these ethical issues. I have attended a conference where this issue has raised. I dont know much about other religions but we had discussion on this issue in Islam (muslims), there were scholars from Iran and I think Saudi. As per these scholars MTP is allowed before 120 days of pragnancy, if there is life threatning condition in the fetus which can  be proved by medical specialists. But After 120 days of pregnacy it is not permitted in Islam to undergo such a procedure.

Hi does any one know in whihc religion Medically Terminated Pregnancy (MTP) is not allowed, As Jemma has said her religion does not allow her to make that decison. I am not sure which religion she is.

The Roman Catholic church forbids abortions, under any and all grounds. The church and its followers consider it to be a mortal sin.

Hello to you all...

Firstly i would like to thank both Andy & Danielle for your understanding and compassion.  Dannielle i would to thank you and give yu a huge hug  :hug for being so honest and brave.  What you had written was exactly the same issues that were brought up while speaking to our genetic counsellor.  Now that all of the people including myself have stopped attacking one another i have been able to read with a clear mind without getting upset or angry.   i am planning to re visit my genetic counsellor to speak about my feelings and i have also booked in for an appointment to see a counsellor to get some help in regards to the death of my baby Ethan.  I think there is alot of hurt and anger there that still has not been dealt with.

I am Greek orthodox and my religion does not condone abortion.  I have also wanted to speak to a priest about my situation.  There is a priest who is also a psychologist. i have wanted to go and see him but am afraid of what he is going to think of me. 

Hearing your story Danielle made me cry.  I know that i am one of those mothers who would constantly be stressed just as your mother was and is with you.  I want my daughter to go to school camps and go to friends houses for sleep overs i know that i would find it so difficult to let a Thal major child do the same.  I dont want any of my children to feel different from the other.  And the one question i pose myself is "if i had a thal major child and they were 3 years old and i had to put the desferral pump attached to them 6 days for 10 hours each day How do i explain to them why they have to do it and yet her sister dosent"

I have really appreciated your objectives views to this matter.

Dannielle i just wanted to give another hug  :hug  :hug  :hug  :hug

Oh allright a few for Andy as well  :hug :hug :hug

Kindest Regards

Vicky 
         

                             

Danielle, that was really brave of you to put your personal feelings about this on the thread.

I wanted to post my similar thoughts too, but chose not to because this topic was for Jemma to help her decide. Furthermore, the other Thals have totally different point of view.

Living with Thal. in Pakistan is totally different from any other country. After seeing other less fortunate than me; I thank All-mighty that I am still hanging on.

Dear Jemma / Vicky,

Firstly I would like to congratulate you on taking the fist steps into resolving this issue for yourself and seeking professional support / advice.

I believe that once you have gone through the greiving process with baby Ethan, you will find that it will be easier to deal with the next issue in your life. Trying to comfort ones soul is never easy and I do wish you all the best of luck with this journey.

This has been an important issue that needs to be discussed within this community. I am sorry if I seemed abit fiery at times but afew comments that were made got to me and I'm not one to sit quitely when I have an opinion...... We are all entittled to an opinion and that is mine. It seems we were talking at cross purposes on occassion.

I hope that other people in Jemma's situation will share their stories with us here (remember to wave the white flag first ....  ?

I do wish you all the best of luck and please stay in touch and keep us posted on how you're doing.

Miaki

The Roman Catholic church forbids abortions, under any and all grounds. The church and its followers consider it to be a mortal sin.

Well I think abortion is not allowed in any religon, here I am talking medically terminated pregnancy (MTP) I think this has diffrent meaning than simply abortion. In allopathic medicine MTP is a common practice for many other conditions as well, if there is danger to mother also some times MTP can be done. We dont refer them as simply abortion. Therefore I think its important to clarify this issue, may be its diffrent from society to society and diffrent beliefs.

Hi all, I am husband to a Thal Major woman and reside in Victoria Australia.

I have always followed the forum here with interest but have never felt compelled to contribute.  Might be laziness or just the fact that I rarely had anything different to say than was already being said.  This thread, however, has peked my interest to the point where I feel compelled to offer my views...accord them whatever weight you will.

I had to smirk at your final post Jemma when some poor soul finally gave you the answer you were looking for and basically said he would be better off dead than living with Thal Major.  You enthusiastically greeted his reply with cries of how "Honest" he was and how glad you were that someone finally  sees the light.  By this you basically intone that previous contributors to this thread were being less than honest in their self appraisals of their worthwhile existance and fullfilling lives? You can argue semantics on this, but reading between the lines it is patently and obviously what you implied.

I think I can guess which ethnic background you hail from and I understand some of the cultural problems associated with Thal in Australia only to well. My wifes second language {English is her first} even has a derogatory slang word which is used to describe people with Thal major which basically translates as "The Bloodless Ones"  Some of the particularly dense and insensitive members of this community even use this word in the presence of Thal Majors. Families actively disuade their children from marrying Thal Majors as, and I quote, "They won't be around for long."  Indeed, when my wife accepted my marriage peoposal the wise old heads of the community nodded, agreeing that it was a good thing that a "Yavanger" {Slang for outsider/stranger} wanted to marry her as not many of the boys from her community would have been allowed to. I found this rather amusing as I knew for a fact that a great many of the boys from her families community would have asked for her hand long ago if their families had allowed them to {She's decidedly easy on the eyes}  Their long faces and blunt refusal to shake my hand at gatherings increased my mirth no end I must confess.  I guess its part of my nature to stand up against biggoted people Jemma, whatever their creed.  I fell in love with my wife because of who she is and how she makes me feel and I would never countenance allowing something as trivial as a genetic medical condition to turn me away from a love like that. 

To hear you deride the existance of people with this condition, and decide to kill your own child should the trait present itself upsets me more than a little. I may get into trouble for stating that as bluntly as I have as watered down politically correct responses appear to be the order of the day around here, but I have always prided myself on an innate ability to cut to the chase. Instead of killing your own children adopt instead, or divorce your husband and marry a non-Thal Minor thusly pretty much elliminating the chances alltogether. Playing "pick and choose" with Gods most prcious gifts is a terrible game to play.  Have a think about what your asking here, and why your asking it at all? Sure you'll find some downtrodden viictims, who probably would have gone through life with a chip on their shoulders even if they were born without a genetic condition, who will vindicate your position and decry their own existance....But your far more likely to encounter people full of passion and life who live it to the full....and you know why Jemma? Because apart from a slip of fate and a small genetic footprint in the sand.....theyre just the same as you and me.

Ohh, just one last addition to my thoughts on this matter.  There is absolutely no excuse to abort a Thal Major in Australia {Particularly Vic} as we have the best therapy/transfussion centre in the world.  Just means you have to take your child in for transfusions every couple of weeks and organise iron chelation tablets once a night, six days a week. Too much of a problem for you Jem? Or are the snickering voices behind raised hands in your community what really worries you?

Too much of a problem for you Jem? Or are the snickering voices behind raised hands in your community what really worries you?

You think that's it?  You think we just get a few transfusions here and there, and pop a few pills?   

TruBlue, there is to be no defamation here, and I feel that your post was disrespecting Jemma.  This is a very tough decision for her, and she is only asking for our opinions.  There is no reason to flame her for wanting opinions.

Dannielle i just wanted to give another hug  :hug  :hug  :hug  :hug

Thank you, Jemma. 

I hope that you will make the right decision for you and your husband, not anyone else.

I also want to say how very sorry I am for the loss of your baby, Ethan.   :hug  :hug :hug :hug

Metallica - The Struggle Within
 

Reaching out for something you've got to feel
while clutching to what you had thought was real

kicking at a dead horse pleases you
no way of showing your gratitude
so many things you don't want to do
what is it? what have you got to lose

what the hell
what is you think you're gonna find?
hypocrite
boredom sets into the boring mind

    struggle within   it suits you fine
    struggle within   your ruin
    struggle within   you seal your own coffin
    struggle within   the struggling within

home is not a home it becomes a hell
turning it into your prison cell
advantages are taken, not handed out
while you struggle inside your hell

reaching out
grabbing for something you've got to feel
closing in
the pressure upon you is so real

    struggle within   it suits you fine
    struggle within   your ruin
    struggle within   you seal your own coffin
    struggle within   the struggling within

reaching out for something you've got to feel
while clutching to what you had thought was real
what the hell

what is you think you're gonna find
hypocrite
boredom sets into the boring mind

    struggle within   it suits you fine
    struggle within   your ruin
    struggle within   you seal your own coffin
    struggle within   the struggling within

Well I think abortion is not allowed in any religon, here I am talking medically terminated pregnancy (MTP) I think this has diffrent meaning than simply abortion. In allopathic medicine MTP is a common practice for many other conditions as well, if there is danger to mother also some times MTP can be done. We dont refer them as simply abortion. Therefore I think its important to clarify this issue, may be its diffrent from society to society and diffrent beliefs.

MTP is just a form of abortion, under special circumstances as defined by a doctor or patient ...... the catholic church proscribes abortion in all forms and cases .... read up on it if you have any doubts about what I am saying.

Actually, based on what I have read of theology, Hinduism has a more open mind on this topic .... a more woman-friendly approach, if you will. Hindu texts take a fairly ambiguous approach to this whole issue .... but anyway, that's a topic for another day.