plz help i am 13 weeks pregnant and found out that my baby has thalessemia major

Hiiii,

I am 29 yrs old and 13 weeks pregnant with my third child. About 5 yrs ago i had a termination beacuse the baby had thal major it was one of the hardest and saddest thing that i have ever done in my life because it was my first pregnancy and there isnt a day that goes by where i dont think about it. But then followed my two beautiful girls one was a carrier and the other had no that at all!!! i called them my miracle girls !!! so i feel pregnant with my third child knowing what might happen and sadly the test came back positive, it was happening all over again the shock and sadness !!!

I dont want to go through another termination but i am also so scared !!! i dont know what to do!! i was hoping as parents of that major some1 can help answer some of my questions !!
Is my child going to have a hard life and suffer??? Is my child going to have bone deformities cause i ve read  somwhere it can happen on the face??? how can i deal with this???
plz help!!!

Aleena

Dear Aleena
Iam a mother to thalassimia major daughter. She is getting blood transfusions and other medecation to for her iron overload. As far iam concern, it should be your decision is where you wanna keep this child or not. In my oponion if the child is kept well he or she should be ok. There are many people out there with thal major who living or trying to live normal life. Its a hard hard road for thal major parents. I guess you need to think about both ways its got its good in bad both. I just feel very sad somtimes when i think about my daughters future. But got has given her to me and i have to be greatful for that.
Best of luck
Alia

Hi Aleena, first off, welcome to Thalpal.

I am a Thal Major teen, 17 years old. Well, my face and all is normal, you cannot identify me as a thal major if you look at me (thanks to my parents for nice care).

I understand that times like these might make you emotionally very sad and might break  you apart. But as a sufferer of Thal major, I know what consequences I had, have and would have to face in future as well. There are certain problems your child would have along with some expensive treatment costs and medications, if you're able to manage it financially. The bones may or may not be week, your child may not have adequate height or growth as generally Thal majors are low in stature (if a child is well maintained, he or she may achieve his/her height & puberty but a few years later than other normal kids) and such teen years may break apart your child's feelings and emotions. This all would happen due to IRON OVERLOAD that your child, being a thalassemia major would receive blood transfusions every 15-21 days, which in turn is a source of IRON and it would get deposited every time your child transfuse. Also this iron, if in excess amount is deposited in various organs like heart, pancreas can cause temporary or permanent organ failures (for example, I acquired diabetes due to iron deposition on my pancreas). To remove this EXTRA IRON induced as a result of transfusion, there are iron chelators in liquid (sub cutaneous) and ORAL form introduced by reputed companies like Novartis but it's a long term and continuous no-way-out process to chelate regularly.

So overall, there are more CONS than pros. So I would NOT suggest bringing the child and along with him/her a lot of miseries that he would need to face, into this world. I know it can be an intense emotion breakdown, but you would be doing for your baby only. You would save him/her from troubles he/she will undergo through his/her whole life.

Do decision wisely, we're all with you.

-Pratik.

Thank you pratik and Alia,

 Thank you so much for your honest posts Its helped me think about alot of things but i still dont know what to do!!! everyday is a struggle for me its so hard been a mother and knowing that you child is sick ,words cant explain the pain that is burning inside of me. Before i fell pregnant we went to see an IVF/PGD specialist cause we knew what the chances were of having a baby with thal major but sadly i walked out of that officethinking its not what i want because i wasnt convinced of the procedure of the PGD where they must remove one or two cells from a day-3 embryo for testing it sounded horrible at the time what if the embryo needs those cells to form a healthy baby !!!but now i think i wish i went through it .I guess life tests us in many ways hope things get better for me.

Thank you again for your replies its great to share stories with people who know exactly what i am going through hope to hear from more parents out there .
Aleena

Aleena,

It is important to understand that when you ask that question, the answers will be based on what that person has experienced in his or her own life. While many patients in Asia and even older patients elsewhere will advise against having a thal major child, those in countries with well managed thal care may give you a completely different view. You are in Australia and that is fortunate, as thal care is well managed in the hospitals with good thal centers. If you wish, you can seek counseling from the Australian Thalassemia Association. They are quite experienced in this area. Their website is at http://www.thalassaemia.org.au/ 
Contact info:
333 Waverley Rd Mt Waverley VIC 3149
 Ph: + 613 9888 2211
info@thalassaemia.org.au

Hi Andy,

Thank you so much Andy i have been hoping to hear from you and yes you are totally correct Australia is one of the best countries and i am very fortunate to live here . I will check out the website , i am just so scared of the unknown !!!

Thanks Andy
Aleena

Aleena,

It is important to understand that when you ask that question, the answers will be based on what that person has experienced in his or her own life. While many patients in Asia and even older patients elsewhere will advise against having a thal major child, those in countries with well managed thal care may give you a completely different view. You are in Australia and that is fortunate, as thal care is well managed in the hospitals with good thal centers. If you wish, you can seek counseling from the Australian Thalassemia Association. They are quite experienced in this area. Their website is at http://www.thalassaemia.org.au/ 
Contact info:
333 Waverley Rd Mt Waverley VIC 3149
 Ph: + 613 9888 2211
info@thalassaemia.org.au

Well, true and false, I believe. I saw my misery and my parent's misery giving birth to me. I somewhere feel, the whole life, they got engaged behind me vigorously. While other parents goes out normally on a long tour or such, I saw my parents staying with me always, and they never complained, but I inside just feel I snatched their fun days, somehow. You only saw a part of India Andy, but Thalassemia care here is also greater as much as any foreign well developed country.

However, these are my opinions and answers, please don't take on heart, both of you.

Regards.

Pratik,

I fully understand the problem in India and much of Asia and that is why I answered accordingly. The reply to one in Australia however, must include the state of thal care in that country. It is a completely different world in Australia, where care is good enough that there are dozens of thals who are also moms themselves. If my reply was to a parent in India or elsewhere throughout much of India, it would be very different. In fact, I referenced this in a reply to a PM about your posting. For those not aware, I will mention that the majority of thal majors born in India die at a very young age without ever having any treatment at all. Even for patients with adequate funds, treatment is not what it could be. In contrast, there are now so few births of thal majors in Australia, due to awareness programs, that these births are quite rare and everything is done for the patient. It is two different worlds. and to fully perform my duties, I must always be aware of what situation is confronted by parents and patients depending on where they live.

I understand, Andy. And I also know awareness lacks in India about babies being born Thal Major. The treatment is good, where IT IS good, and where there isn't, it's bad, I must say. But its not like that the treatment in whole country is bad, I live in a high profile city where every doctor knows what thal is and are managing some patients very well, in fact I meet them regularly.

Anyways, best of luck Aleena, just do what you feel right and all will happen good, we are here with you.

Pratik,

I fully understand the problem in India and much of Asia and that is why I answered accordingly. The reply to one in Australia however, must include the state of thal care in that country. It is a completely different world in Australia, where care is good enough that there are dozens of thals who are also moms themselves. If my reply was to a parent in India or elsewhere throughout much of India, it would be very different. In fact, I referenced this in a reply to a PM about your posting. For those not aware, I will mention that the majority of thal majors born in India die at a very young age without ever having any treatment at all. Even for patients with adequate funds, treatment is not what it could be. In contrast, there are now so few births of thal majors in Australia, due to awareness programs, that these births are quite rare and everything is done for the patient. It is two different worlds. and to fully perform my duties, I must always be aware of what situation is confronted by parents and patients depending on where they live.

Hi Dear Andy,
I agree with you but partially.
What i want to mention here is that recently i came to know about a Sikh Thal. Major Patient who is a Sikh by caste and have cracked UPSC Exam the toughest one in India having beard and  mustache like Sikh and Punjabi plus normal height. Truly Normal looking. No symptoms of Thalassemia Major.
Now he is an IAS Officer, which is the highest post in the Indian Administrative Service(IAS).
And it happened in India, Everything is changing here, the awareness in people is at highest level nowadays.
But giving birth to Thal. Major Child is the toughest task.
Dharmesh.

Hi Aleena,

My name is Maria and I'm a Thal Major patient living in Melbourne Australia, I also work for my society Thalassaemia Australia. There is plenty I could write here but I would be here for hours. If you would like to ring me on (03) 98882211 or you could try our 1300300318 number and I am more than willing to speak to you and fill you in and also referring you to somebody if your not in Melbourne. Alternatively if you would like for me to call you message me or email me at work with your details and more than happy to call you.

I hope to hear from you.

Miaki (Maria)

Aleena,

I'm a 20 year old student living in Arizona and am living proof that people with Thal can have normal lives! If you do decide to have the child, the most important thing would be to teach him/her that although they will face greater obstacles in life (both physically and emotionally), they can rise above them and lead a fulfilling life. I'm not denying that life will be the same as a non-thal, but I think that life is worth having and living, and Thalassemia certainly isn't as bad as other illnesses can be.

My parents have taken great care of me and have instilled the values of optimism and perseverance in me. I was high school valedictorian, am going into my third year of college, and have plans of going to pharmacy school soon. I have great support from friends and an understanding boyfriend who goes to my transfusions with me. I understand that at any time, my blessings may change and life can/will become harder. But I appreciate everything I have and I'm sure that if you go through with having the child, you can raise him/her to see Thal more as a 'character builder' than something that will hold them back. 

Chanapa

Aleena,

I'm a 20 year old student living in Arizona and am living proof that people with Thal can have normal lives! If you do decide to have the child, the most important thing would be to teach him/her that although they will face greater obstacles in life (both physically and emotionally), they can rise above them and lead a fulfilling life. I'm not denying that life will be the same as a non-thal, but I think that life is worth having and living, and Thalassemia certainly isn't as bad as other illnesses can be.

My parents have taken great care of me and have instilled the values of optimism and perseverance in me. I was high school valedictorian, am going into my third year of college, and have plans of going to pharmacy school soon. I have great support from friends and an understanding boyfriend who goes to my transfusions with me. I understand that at any time, my blessings may change and life can/will become harder. But I appreciate everything I have and I'm sure that if you go through with having the child, you can raise him/her to see Thal more as a 'character builder' than something that will hold them back. 

Chanapa

Hi Aleena,

I am in complete agreement with Chanapa. I was diagnosed as Thal Major as a child and later classified as Thal Intermedia. Although I was weaker and smaller than other kids my age I was also smarter. Always catching on and learning faster, which it's something I notice as a common theme amongst all of the Thals I've met here. They've proven to constantly excel where people said they shouldn't. Correctly managed Thal is doesn't have to be a burden on you or your child. Sure there will be Dr's appointments, but there will also be birthday parties, playtime at the park & graduations to look forward to.

Good luck to you on whatever you decide.

Hi,
Thank you all so much for your replies, its so great to hear from ppl around the world who are going through this condition and embracing the situation. Sadly there is still one thing that is on my mind if i decide to keep the baby i dont really have much of a support system my husband is probably the only one that will fully understand and support me all the way with alot of love and care but my family will not, i know this sounds horrible but its the truth i come from a broken family my parents got divorced when i was 7 and its been hard ever since i am 29 and still facing challenges from this. I ask my self Will i be able to take care of a thal child i hope i am strong i really do.

Thank you all again amd Miaki i will be in contact with you very soon!!!!
Aleena

Aleena,

I'm a 20 year old student living in Arizona and am living proof that people with Thal can have normal lives! If you do decide to have the child, the most important thing would be to teach him/her that although they will face greater obstacles in life (both physically and emotionally), they can rise above them and lead a fulfilling life. I'm not denying that life will be the same as a non-thal, but I think that life is worth having and living, and Thalassemia certainly isn't as bad as other illnesses can be.

My parents have taken great care of me and have instilled the values of optimism and perseverance in me. I was high school valedictorian, am going into my third year of college, and have plans of going to pharmacy school soon. I have great support from friends and an understanding boyfriend who goes to my transfusions with me. I understand that at any time, my blessings may change and life can/will become harder. But I appreciate everything I have and I'm sure that if you go through with having the child, you can raise him/her to see Thal more as a 'character builder' than something that will hold them back. 

Chanapa

Great response. 

Yes, thals can live like normal, like I do, due to not been looking like what other less chelated patients look. Yep, life can be harder at any point, but I appreciate myself living into this world. I've achieved so many things in life what normal people couldn't or may hardly achieve, as well. So I don't blame god or anyone, instead I take it as a good will rather than curse.

Aleena, I believe you should go with having a baby if you feel okay. I was just advising from my inner heart because I didn't wanted to see a baby or a mother go through this.

I actually remembered Lisa's (the founder of Thalassemia Patients & Friends, who was also a Thalassemia Major patient, an angel) golden words to his mother, "Mom, don't let any other mother go through this" so that made me stop you.

I wish you success in whatever decision you take.

Best,

Pratik.