An emotional question !!

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Offline Zaini

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Re: An emotional question !!
« Reply #30 on: October 02, 2008, 07:35:31 PM »
Thanks a lot Romaine,

Every person who has replied in this post has helped me in one way or another,i am weighing my chances and re locating my options,i'll proceed with everything people here said in my mind.

Thanks again,

By the way, i love your name :) .

Zaini.
^*^Xaini^*^

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Offline poo gill

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Re: An emotional question !!
« Reply #31 on: October 13, 2008, 08:01:46 AM »
Hi Zaini

I spoke to many doctors in the conferece about our concern. In fact I think I annoyed one of them as well by being honest, I was enquiring about HLA match and they were going on and on that it is unethical to bring a child only for sole  purpose of bMT. I said if I have a guarantee that my new born can actually bring a cure to my son then only  I will embark on the journey of getting pregnant thru IVF or else there is no point. Cos I feel that it is too much of responsiblity and I will be compromising my  time with my children existing  if I bring another life in this world. But if I get a gaurantee that the hla is 100 % and it can cure my son it is acceptable to me. Also it will be unethical only if I dont love my new born as much as my son and daughter and a mother loves all her children equally. It would be un ethical if I dont give a good life to my new born which is not the case, so why is it unethical to talk about a cure. 

Anyways the crux of the matter is that IVF can be done but it is not easy and they will have to give u fertility drugs and there will be numerous tests in terms of injections when you get this done. So it is quite a  difficult procedure as in to extract ova and then put you on hormones to increase fertility and stuff. Basically it is not an easy besides the cost. harvesting ova is painful with needles and stuff. Plus your time wil be compromised it is a long drawn process.

However if you decide to go thru this then i suggest that you actually do the HLA matching  in terms of PGD. no point going thru the IVF and not doing PGD. If you do PGD atleast in future you are sure by some miracle if there is a cure you have a 100% match. Having said that you still should assess the situation cos IVF is a painful procedure. I know we mothers can take any amount of pain for our kids but you please explore the PGD as well . It could be additional cost but trust me it is going to be better, just in case if there is BMT possibility in future atleast you have a 100 % match.

Have a detailed discussion with your centre when you go there and dont be shy. Cos whatever you do it will be the best decision for your kids.

All the best.

"We are like angels with just one wing. We can only fly by embracing each other." 

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Offline Zaini

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Re: An emotional question !!
« Reply #32 on: October 13, 2008, 12:26:21 PM »
Thanks Puja,

For so much concern,Right now i am between things,i haven't decided anything yet,and yes IVF sounds scary to me too,when my daughter was born,although she was born normally,but after going through doctor's pokes for nine months i was so scared that after her birth i felt like i'll throw up if any one touched me,so i can understand IVF is totally another story.So i don't know what would i do yet,Are you planning too?

Zaini.
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Offline poo gill

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Re: An emotional question !!
« Reply #33 on: October 13, 2008, 02:54:42 PM »
Nope Zaini , I am not. Unless I get a gaurantee that it is going to be a cure for Prat. I straight away asked the Doctor and we said what if we dont do anythign and there is a cure in future and it is too late for us to give birth(Manal was with me too). But it seems you know if the cure comes along the lines of gene therapy then there is no need for HLA. As for BMT it is really really scary and I dont think it is essential for all of us to  even consider putting our kids who are doing well with other stuff to go thru the pain of BMT. Unless there is a BMT wihtout chemo therapy but this is another story ????????, which also looks bleak at the moment.

As of now I am not planning anything, also I have learnt in life, we plan something and look for  something and  if God doesnt want it - a totally different thing happens.  I read this quote  somewhere : GOD answers all the prayers, sometimes his answer is a " Yes" and sometimes he answers a " No" and sometimes he says " YOU GOT TO BE KIDDING ME".


So I have left the options open. Lets see.

luv

me
"We are like angels with just one wing. We can only fly by embracing each other." 

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Offline Manal

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Re: An emotional question !!
« Reply #34 on: October 16, 2008, 05:46:52 AM »
Hello everyone,

I came across this link, check it please

http://typicallyspanish.com/news/publish/article_18439.shtml

manal

Re: An emotional question !!
« Reply #35 on: October 16, 2008, 04:19:48 PM »
Zaini,
Just a short note to let you know that I also found out that it is possible to actually choose the match from the egg stage, guaranteeing as well that the child will not be thalassemic. i was actually communicating with a specialist on the states about this and was amazed as to what can be done now.

What you do have to rmember though is that while transplant can mean that the child is cured, there is always the risk that the patient can just switch back to being major without warning. in addition the chemotherapy and side effects from transplant also causes sterility in patients.
I know that there are options which sounds fantastic but it is really expensive as well. Maybe you can also google the following address for further information:
http://www.genesisgenetics.org/?gclid=CNKkyJ6TrJYCFR8cEAod42zBzg

Hope that this is useful.
Romaine

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Offline Zaini

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Re: An emotional question !!
« Reply #36 on: October 16, 2008, 05:03:11 PM »
Hi Romaine,

Actually i am not planning for a transplant,but every one here was advising me that "if" i choose IVF as my option,and it's a big if ,then i should make sure that not only my baby is thal free but also genetically matched with my daughter,so if in future,there comes something safer then BMT,or a safer form of BMT,we'll be able to opt it.
But the thing is that i doubt that any such genetic matching is available here in Pakistan,and may be if it is,then there are no banks to save cord blood,i'll search it in detail anyway.

Thanks Manal  :hugfriend For the link,i don't think there is any ethical problem in bringing a child in world to cure another one,they'll be siblings and parents would love both of them in the same way.

Zaini.
^*^Xaini^*^

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Offline poo gill

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Re: An emotional question !!
« Reply #37 on: October 21, 2008, 02:38:27 AM »
Hi Zaini

in case you want to write to the Doctor I was talking about from India. Who is an expert in BMT and PGD. His email address is

mammen@cmcvellore.ae.in

He is good, I will search on the net and give you the complete address and where does he practice, cos I was not able to get in the short meeting.

luv

puja
"We are like angels with just one wing. We can only fly by embracing each other." 

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Offline Zaini

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Re: An emotional question !!
« Reply #38 on: October 21, 2008, 12:58:25 PM »
Hi Puja,

I did correspond with Dr Chandy when my daughter was diagnosed,i sent him my daughter's and our HLA reports but he told me that our reports were not totally matched,He practices at Christian medical college and hospital a.k.a CMC in Vellore.And yes he is the best,they have very good results with BMT.

Zaini.
^*^Xaini^*^

 

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