I have 2 children with thalassemia major and would like to go through BMT

I have 2 children with thalassemia major and would like to go through BMT. We live in Switerland and have already discussed with doctors about IVF with PGD.  We know that the balance of living with thalassemia and life after BMT is not great.  We are planning to at least have the 2 children with sibling matches, and save their cord bloods (because I am not getting any younger).  And eventually as research progresses we will decide on going through BMT for them (or they could decide) if the process of chemo is better.  At least from our side we have their sibling matches.

What my husband and I are having a difficult time with is that ofcourse in this day an age raising 2 kids is tough enough, let alone with illnesses.  Will it be fair to bring in 2 more children in this world (fair to my present 2, fair to the newer 2)  We are quite financially stable, but I do not know how emotionally stable we can be to 4 kids. I don't at the same time want to loose this oppurtunity of curing my kids if I can, and I do not want them to say "Mum, Dad u had this opportunity which u blew for us." 

We did not know anything about thal, before my daughter was diagnosed at 9 months.  We knew my son had thal major at pregnancy through amnio.  We decided that an abortion was not an option, because u should see them...they are perfect. 

We are desperatly looking for some support here...has anyone gone through IVF with PGD and then contiued with a cure. My children are still quite young 4 years and 8 months, how hard is it as they get older?

Sharin

Hello Sharin.
 Welcome to our site,
I came across your posting and I thought that you currently has a major ethical issues to deal with,
I would suggest you and your husband get  professional counselling, to clarify  your dilemma.
I dont think that anyone here will be able to tell you whether you should or not, do what you want to do .this is a touchy  and heart- rending issue.
regarding your exixting two beautifull children they can live a nice fullfilling lives,
there are lots of means and research and help for thal major these day.
good luck in what ever you decide  ,we are here to assist you with any concern you might have with your two children who has already been diagnose with thal major

I'm concern and I care
Kathy.

Hi sharin welcome to the site.
i would say i really feel for your  family for having to go trough two kids with thalassimia major.
its very hard for us is well,my my daughter who is now 22 monthes got thalassimia major. we got tw other kids who got minor,we r also scared of having onother one as it will hard for us to take of while having to look after sara.

if you got support of your family and friends,why not have more children ,like u said people dont go any younger.it would be hard but it would be somthing that save your kids lives also having more kids is a blessing.for me its hard cause i dont have the support also i got other kids is well.

in regards to bone marrow transplant,i think u should read more about it.there one member in the the site whos son had bone marrow transplant.

i dont know much about ivf but im sure u will more in fo on that.
i hpe everything goese good for you.
alia

Thank you for your kind words, I wish I had found this site much earlier, everyones questions and posts have given me such courage and hope.  A new light has been shed on this illness.  It is really nice to know that there are children, adults and families going through what we are here.  I literally read for hours, and I feel such a strength.  Thank you for your encouragement and kind words.  We have decided to put this thing on hold, as we do not have much family support, having 4 kids will be tough, instead we will give all the energy we would have to 4 to our now 2.

Alia, do u know who's son got the BMT, could I contact them?  Thanks.
Sharin

Hi Sharin,

I agree that until you can be sure you are ready for a bigger family, that it is best to wait. One thing that you need to have settled in your mind is that you want and can handle more kids. It could cause some problems in the new children if they were to feel that they were conceived as donors, so there would be some potential psychological issues to be dealt with.

We have two members who have had BMT's done for their children. Khalifa and Omega have both had BMT's done for their children and in both cases they were successful, although they are both fairly recent, having been done in the past two years. However, both children continue to improve. We also have a member who had a BMT done as a young adult and hers also was a success. Please keep in mind that there is some danger in BMT and not all patients find success and some do die after the procedure. A very interesting note, should you consider BMT in the future is that Omega's daughter received bone marrow from an unrelated donor. I would suggest sending personal messages to both Omega and Khalifa and ask any questions you may have. A search for either name will bring up many relevant posts. Khalifa is currently in Italy with his family for a regular checkup for his son, so it may be difficult to reach him immediately. He will be returning home to Kuwait in early September. The BMT was done by the famous team led by Dr Lucarelli.

Treatment for thalassemia has improved dramatically in recent years and will continue to improve. A young thal today who has access to quality care can expect to have a much longer life than thals of previous generations. In addition, there is much research taking place that will lead to better treatment and even a potential cure. Trials for gene therapy will commence in the US in 2008 providing the necessary funding is found. Trials on animals have been a success so their is some real optimism that eventually a cure will be available for thalassemia.

Hi Sharin,

This indeed is a very touchy matter that you should consider much. Just to share w you about myself, my sister and I are diagnose as Thal Major and has been suffering this for the past 30yrs. While I was still young my parents had the same thoughts as you, they wanted to have a bigger family and hope that the other child would be able to save us in future through BMT. I can believe it was a tough decision for them to decide and after going through counselling with the doctors they decided to drop the idea. What they had told me was they couldnt guarantee that the other child would be perfectly fine and what would happen if he/she is also diagnose with Thal major? They might not have the heart to abort the child and worse would be to born the child out to go through the same stuff. BMT has also its danger and its not a totally safe method where if the transplant doesnt go successful the child would then be back to its orignal state w Thal Major, they could even lose their life.

I'm not trying to convince you not to take this option but you should consider this matter thoroughly and look at all possibilites.

Thanks.

Thank you for your responses Andy and Howard.  My husband and I have discussed and are putting it on hold.

...but another question,
if any of you had a donor, and still have your spleen would u go through chemo to get a BMT, for a chance to be free of blood transfusions and iron chelation.  Instead you would have to worry about being infertile and ofcourse being extreemly sick for a year?

Hi,

Infertility is one of the most concerned issues of BMT. However it is not necessary that it happens to everyone who undergo BMT.

At a local Thal. conference earlier this year, this issue was brought up to a doctor attending the conference who performs BMT in Pakistan. He said that although most of his patients are still kids but there is one young man who got married and now is a father of a child.

So, far so good. However we have to wait till the rest of the kids grow old to become parents to find out what is the ratio of infertility. I am talking about Pakistan which is still a developing country and medical treatments are not top notch. So, if the results are good enough to take a risk then I hope the odds are much better in countries where BMT is a matter of daily routine.

If I had a matching donor, I'd go for it in a medical facility who have the best results.